the parenting autism resource guide by dave angel · the writer of the material present in “the...

The Parenting Autism Resource Guide

The Parenting Autism

Resource Guide by

Dave Angel

1 To subscribe to our FREE Monthly newsletter for parents of autistic children go to: www.parentingaspergers.com/autismnewsletter.htm


Disclaimer

The writer of the material present in “The Parenting Autism Resource Guide” believes that a multi-disciplinary approach to parenting Autistic children is of extreme importance. This means combining the approaches of a wide variety of disciplines involved with Autistic children and their parents such as social workers, nurses, teachers, doctors, psychologists, psychiatrists, counselors, speech therapists. Also it involves using the knowledge and information of parents themselves.

The author recognizes that within scientific, educational, social and medical fields there are widely divergent viewpoints and opinions. This material is written for the express purpose of sharing educational information gathered from the experiences of the author and other people in the areas mentioned above.

None of the information contained in this e-Book is intended to diagnose, prevent, treat, or cure Autism, nor is it intended to prescribe any of the techniques, materials or concepts presented as a form of treatment for Autism.

Before beginning any practice relating to Autism it is highly recommended that you first obtain the consent and advice of a qualified health, education or social care professional. Should you choose to make use of the information contained herein without first consulting a health, education or social care professional, you are prescribing for yourself, which is your inalienable right.

However, the author assumes no responsibility for the choices you make after your review of the information contained herein and your consultation with a qualified health, education or social care professional.

None of the statements in this article or in the book have been evaluated by the Food & Drug Administration (FDA), or the American Medical Association (AMA). Every effort has been made to accurately represent this product and its potential. However your level of success in attaining the results claimed in this program depends on the time and effort that you devote to the program, ideas and techniques mentioned. Results will vary for people on an individual basis. We cannot guarantee your success nor are we responsible for any of your actions.



Table of Contents Table of Contents 3 Introduction 5 Problems in the Family Home 16 New diagnosis of autism 19 Temper Tantrums 21 Challenging behaviors 24 Clothing problems 27 Potty training 30 Speech Communication 34 Maximizing potential 37 Family upbringing and development 40 Autism and Twins 42 Reverting to old behavior 44 Social Issues 46 Going to church 48 Social Interactions 50 Adolescent behaviors 53 Education and School Issues 56 Making a room autism friendly 58 School and A.B.A. 61 Home from school 63 Visual communication aids 66 Help, Treatments and Support 68 Speech Therapy 70 Autism treatment 72 Autism cures 77 Communication problems 80 Non-verbal children 82 Playing with saliva 84 Medical Questions 86 Autism and genetics 89 High Functioning Autism and Asperger’s 91 Autistic children in the world 93 History of autism 96



Boys, girls and autism 99 The autism epidemic 102 Life span 105 Autism and mercury poisoning 107 Autism and immunizations 109 Autism and health problems 111 Autism and Down’s Syndrome 114 Autism and A.D.H.D 117 Autism and microcephaly 120 Autism and Bulimia Nervosa 122 Autism and hearing disorders 125 Family links to autism 128 The autistic brain 131 Steroids and Asperger’s Syndrome 133 Late diagnosis 135 Autism and Morton Toe 138 General Autism Questions 140 Gluten free diet 145 More challenging behaviors 148 The future 151 Trying new foods 153 Final thoughts 155



Introduction



Hello my name is Dave Angel and I would like to welcome you to my book

which has been written specially for parents and other family members of

children diagnosed with Autism.

This book will reveal the answers to the questions that so many of you have

about your child with Autism.

There are so many things to know and learn to allow you, your child and the

rest of your family to enjoy living an enjoyable, happy and fulfilled life.

By getting a copy of this book you have already taken a big step down this

road to an improved relationship with your child and a better quality of life for

all of your family.

My own personal interest in this area comes out of working for the past 11

years in the social work field with people with disabilities.

I have worked in day centers, residential care homes and in recent years as a

social worker in the local community.

During this time I have worked with both adults and children on the autistic

spectrum.

I have also been involved with working with the parents, carers, siblings and

other family members of these children.



Working with these families has really opened my eyes to what the impact of

having a child with Autism can be like; if the families are not given the correct

support and information.

There are only so many times that you can battle with the

health/education/social welfare systems day in and day out on behalf of your

child , only so many outbursts and displays of difficult behaviors that you can

cope with and only so much pain and suffering that you can go through.

I have also seen the siblings of Autistic children become more and more

depressed by their brother or sisters behavior, more and more resentful of the

different ways in which their sibling with Autism is treated and how they seem

to get so much more attention.

As you can imagine this can feel so unfair on the other children in the family

and can have hugely negative consequences for them in their development,

their feelings of self-worth and personal identity.

But the big thing for me is that things do not need to happen in this way.

A great deal of that pain and suffering could be avoided with the right help.

Sure there will be a steep learning curve with ups and downs – but isn’t that

the same with bringing up any child?



Having a child with Autism should and can be as much of a joyful gift to the

family as any other child in the family.

With a proper understanding of Autism and knowledge of the different tips and

techniques that can be used with Autistic children the whole situation can be

reversed.

Because as well as working with families that are fraught, confused and, in

the extreme cases, divorcing I have also known families where the opposite is

true.

In these families the Autistic child is valued for their uniqueness; the family

unit is set up to allow more positive experiences for that child and everyone is

so much happier.

Now I am not getting to tell you that these families don’t encounter problems;

all families encounter problems with or without Autism.

But these families overcome problems so much easier and often take early,

and simple, preventative steps to stop a tiny problem quickly turning into a full

blown incident of anger, rage, temper tantrums and more.

And believe me this isn’t because some families are better than others.



In my opinion it comes down to one major thing; education.

By education I am not talking about schools, teachers and blackboards (or

should that be power-point presentations in these techno-friendly days!)

although that undoubtedly plays its role.

No I am talking about families being educated properly in the world of the

Autistic child.

There are certain fundamental things that parents must know and understand

about raising children with Autism.

There are also many effective tricks, tips and techniques that parents can use

to help them to cope with a whole variety of circumstances and problems that

arise when raising children who have Autism.

It is this need for education that has given me the desire to want to compile

this resource for parents to use as a guide, reference point and hopefully a

source of inspiration.

I wanted the resource to give the real nuts and bolts low down on how parents

and other family members can best deal with a whole variety of situations and

circumstances with their Autistic child.

I also wanted it to be accessible and really easy to understand for everyone.



So I have compiled this resource to be like an instructional guide for parents

with Autistic children.

This is not an academic text book full of studies, theories, and unnecessarily

long words!

Now don’t get me wrong these books have their place and are invaluable at

times but that is not what I am about.

This resource is designed very much like a car manufacturer’s manual or an

A-Z of decorating type of book.

In these books you may look up in the index “how to refill my car with oil” or

“how to stain a wooden door”.

Then you thumb to the page and you get a quick and easy no-nonsense set of

instructions to follow.

Well this resource does that with the questions that you have about your child

with Autism.

I have taken real life problems, difficulties and questions from parents and

other family members of Autistic children and then answered them in a holistic

way.

To subscribe to our FREE Monthly newsletter for parents of autistic children go to: www.parentingaspergers.com/autismnewsletter.htm

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I know what some of you are thinking - “holistic – I thought he just said he

wouldn’t use those fancy academic words”!

But holistic is just another way of saying that it is really important to get the

opinions and advice of a variety of professionals and family members.

So that you can see the “whole” problem and so get the “whole” answer.

That is what holistic really means.

This is because all of these different people can have a crucial role to play

with the differing experience and knowledge that they can bring to the table.

I would also like to add that it goes without saying that the child should also be

at the centre of this and be involved as much as their ability and age will allow

them to.

But for this resource I have chosen to consult a wide range of professionals,

parents and other family members of Autistic children.

I have not consulted with children because in my opinion getting the views of

the child with Autism is a hugely rewarding yet complex task worthy of a book

in its own right.


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I felt that to just add a section with children’s views to this resource would not

do this deeply complex area justice.

It would also distract from my major goal which is to provide good quality

answers to the problems experienced by parents and other family members.

I will leave this area to others who may be better qualified than me and more

focused on providing the answers from the child’s perspective.

So for this resource I have consulted with other social workers, psychologists,

parents, speech therapists, teachers and other experts in the field of Autism.

These individuals are based in Europe, North America and Australia in order

to incorporate a wide variety of expert opinions to answer the questions.

Now you may be wondering where I got all of these questions that parents

with Autistic Children wanted answers to.

Well I ran a survey on the internet asking people to contact me with their most

important question about their Autistic child.

As you might imagine I got a phenomenal response from a whole variety of

parents and other family members of Autistic children; that were experiencing

challenges of one sort or another.


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The funny thing was that these people came from all over the globe from the

UK to Canada, to Australia, New Zealand, the USA and many more places

besides.

Yet a lot of their questions and problems were pretty similar.

This gave me even more proof that a direct response (question and answer

resource) such as this is desperately needed out there in the world.

So that parents and other family members can educate themselves easily and

effectively on how to cope with a certain situation or challenge that may occur.

Because if it’s happening to them – you can be pretty sure that something

very similar has happened to other families and may well happen to you.

So instead of starting at the beginning of a long “trial and error” process you

can piggy-back on the knowledge and experience of other families and

professionals.

In this way you save time and heartache along the way to getting the right

answers and techniques that work.

So in the survey some people wanted to know about coping with certain

behaviors that their child displayed, others were concerned with how best to


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communicate with their autistic child, yet others were concerned about the

types of treatment that is available.

Many other questions on areas such as social problems, problems with

personal hygiene, education, understanding what Autism really is and the

possible effects of diet were asked as well.

So this resource is organized into six easy-to-navigate subject areas:

1. Problems in the Family Home

2. Social Issues

3. Education and School Issues

4. Help, Treatments and Support

5. Medical Questions

6. General Autism Questions

Each area has an introduction explaining what it is all about. Then the area is

made up of real life questions and the answers to them.

The questions are written in red to mark them clearly as separate from the

answers.

There are also links to other websites that can give you further information,

help and advice too.


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For those of you who struggle with computers and the internet don’t worry. All

of the websites are just a click of your mouse away!

Every website that I mention is written in blue (like for example the website

http://www.autism.at/ which is the website for Autism.at).

This blue writing is called a hyperlink and will take you directly to the web site.

All you need to do is hold down the Control key on your keyboard (it’s a little

button that says Ctrl; on my computer it’s on the bottom left hand corner which

I guess will be the same for everyone) and at the same time point your mouse

anywhere over the blue writing and then click your mouse once on the left

hand side.

Voila you will be connected up to the website; it’s as simple as that!

I hope that you really enjoy this book and more importantly that it helps to give

you the ideas, opinions and inspiration to improve your family life and

relationships with your Autistic child.

Good luck and happy reading

Dave Angel


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http://www.autism.at/


Problems In The

Family Home


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In this chapter we will look at different strategies for dealing with a variety of

problems in the family home.

This is one of the most difficult areas for parents and can to be the area where

most help is needed.

In our internet research family problems were one of the most asked for areas

of support from parents.

In this chapter we will explain how to cope with a new diagnosis of autism for

a child in the family and what this really means.

We will provide practical ways of calming an autistic child down when in a

temper tantrum.

There can be great problems in the family home when a child displays some

difficult and challenging behaviors; we look at ways of working with this.

Potty training an autistic child is another frequent question and we reveal

handy tricks and techniques for this.

We will look at the problems in communicating with your autistic child and

ways to get around them.


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We will also look at the topics of twins (when only one twin is autistic) and

getting the delicate balance right between letting your child develop but

managing the risks safely.

Finally we will cover the impact of family expectations on development and

how to cope if your child reverts to previously finished with difficult behaviors.


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Question 1

My partner has a 7 year old daughter to a previous marriage has just

been diagnosed with Autism. How is it best treated and dealt with, or is

there anything a parent can do to reduce the affect in any way?

Autism will affect each child differently. Some children will be affected mildly

while others may experience greater difficulty.

Autism is generally recognized first by stereotyped behaviors or a lack of

communication and/or social skills.

Children with autism may use unusual speech patterns.

They may have a difficult time understanding body language of others. They

may avoid eye contact.

They may be hypersensitive or hyposensitive to sensory stimulation, either

craving it or avoiding it.

They may perseverate on one or two activities or topics. To perseverate is

the tendency to repeat an act or activity.

While you won’t be able to cure a child with autism, you can teach them skills

or rearrange the environment so that they can fit in.


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It is important to identify their strengths in communication and build on them

accordingly. For example teaching social skills will enable them to function

within the school system.

Moreover, recognizing them as an individual, just as you would with any child,

will allow you to be a source of support for that child.


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Question 2

What can you do to calm down a child with autism during a temper

tantrum; he gets so mad we just don’t know what to do?

Tantrums or challenging behavior is generally the result of one of four things:

1. To get something

2. To avoid something

3. Because of pain

4. To deal with a sensory need.

The first step for you will be to determine what is causing this child’s behavior.

Rather than focusing on how to calm the child’s behavior, it may be better to

determine how to prevent the behavior.

This can be done by spending a week or two keeping track of the A-B-Cs:

A - Antecedent is that which happens immediately before the behavior.

Common antecedents include:

• requests to complete tasks,


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• verbal prompts to discontinue an activity or behavior, or a transition

that the child is not prepared for.

B - Behavior is the tantrum.

C - Consequence is what happens immediately following the behavior.

Consequences may include:

• Additional attention from you

• Requests to complete the task were discontinued, i.e. the task was

avoided.

• Additional help was provided to complete the transition.

The important thing to remember is that the behavior has the desired result

for them…..it works!!!

Whatever they are trying to get or avoid happens and that is why they

continue the behavior.

These tantrums may be the result of an inability to communicate their

feelings or desires.

Even if a child does not have the ability to use functional verbal

communication, they can be taught to use signs to indicate their desires or

needs.


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Tantrums can also be caused by being over-stimulated.

Once you determine the cause of the behavior, try to determine if there is

another skill that you can teach the child that will meet their needs as

effectively as the tantrum.

In the meantime, recognize that the child who is upset will need many of the

same things that you and I need when we are upset.

They need support. They need an environment that creates calm. They

need their needs met.

Avoid situations that trigger challenging behaviors and provide positive

reinforcement for positive behaviors.


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Question 3

My 4 yr old was diagnosed with high functioning autism 2 yrs ago and

since then has been in OT, SLP, and has some ABA therapy. Due to

finances I was not able to continue. Some of his behaviors are: taking

every book off the shelf (and running over them), dumping my

houseplants, climbing to the highest point he can find (or over the

fence), smearing faeces (if given the opportunity, I try to make it

impossible, and I'm sure you can understand why), his stimming

behavior includes hand flapping, spinning, running, staring, all of

which I'm sure are normal considering. I chose to put him on a small

dose of Adderall in order to cope with his high energy as I was so

stressed out (I should mention I have four children). Am I doing what's

best for him? How can I help him more?

First, let me tell you that you are to be congratulated for your efforts.

Raising a child that is “normal” is challenging, much less raising one that has

been diagnosed with autism or any other challenge.

I understand your financial challenges, but there are places that can, should,

and will help you so that you do not bare this burden alone.

First, I would encourage you to contact your local social service agency. I

realize this can be a difficult step, and you may not want to enlist their help,

but it is their job to do so.


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There are government monies available to help your son and you and you

need to take the steps to get those monies flowing.

Basically, they will need to know what your son’s diagnosis is, have some

documentation and they can determine that he is in need of services.

There aren’t many families out there who can face this financial burden.

Once it is determined that your son is in need of services, your case worker

will help you to obtain those services.

These services have been created for families so that children don’t go

without the special care that they may require.

In the meantime, I would suggest you focus on the one or two behaviors that

are the most difficult to deal with.

I realize this may be a challenge, but it will be counterproductive to try to

eliminate them all at once.

Once you have decided what needs to be addressed immediately, try to

determine if there is a way that your son can meet this need in an appropriate

manner.


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Obviously, he needs a lot of physical activity. Try to come up with a plan that

will provide physical activity for him as often as possible, i.e. going to the park,

running, jumping, going down the slide.

Once you have provided that, other behaviors may be easier to reduce.

I’m not sure if Adderall is the best drug for your son. If it seems to be

reducing behaviors, then continue with it.

If it does not seem to be making an effective change, then I would consult with

a psychiatrist, once your services are in place to determine if there is

something that would be better.

Medication can be very necessary and very useful in providing a quality of life.

Good luck to you and your son.

As I said, there are government-sponsored programs that will provide what

you need.

That said, once you are receiving services, it will become your task to make

sure those services are benefiting your son, or you will need to seek changes

with your case worker.


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Question 4

How do you try to potty train a child with autism? How do you teach a

child with autism not to take off their clothes and nappy and play with

the contents?

Potty training can be a bigger challenge with a child with developmental

disabilities.

Although you will look for some of the same signals as you would with any

child, readiness, etc., those signs may not come until later with the child with

autism.

The autistic child may be afraid of the toilet or simply not know what they are

supposed to do.

Sounds can be very irritating and overwhelming to the autistic child, making

the toilet an unfriendly place as the sound may actually hurt their ears.

If that appears to be the case, you can start with a potty chair that is kept

away from the toilet.

Some children will actually need a demonstration in order to understand.

Sensory deficits may also make it difficult for the child to know when they

need to go to the bathroom.


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You may be able to apply the TEAACH methods to toilet training.

TEACCH brings visual clarity to the learning process in order to build

receptiveness, understanding, organization and independence.

The specific method used is tailored to the child’s needs and may use pictures

to prompt the child, or the use of videos to train the child.

The children work in a highly structured environment, which may include

physical organization of furniture, clearly defined activity areas, picture-based

schedules and work systems, and instructional clarity.

The child is guided through a clear sequence of activities and therefore able

to become more organized.

The child understands that there is always a progression and always a “next.”

Toilet training will also introduce a transition into the child’s life and autistic

children are not typically comfortable with transitions.

The use of a favorite toy or book may help with this combined with the use of

a timer to indicate that it is time to go.


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Children with autism may not be uncomfortable being soiled as most children

would be.

Reduce distractions and obstacles. You may need to invest in some clothing

or diapers that cannot be removed by the child.

For more information on TEACCH visit http://www.teacch.com/


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http://www.teacch.com/


Question 5

Please help me I have a 4-year-old son who is non-verbal and diagnosed

with moderate autism 6 months ago. I am trying to potty train him but he

just isn’t interested and doesn’t even seem aware of his own toileting

needs? Should I just give up, is there a good program you could

recommend where can I get more help?

It is possible to potty train your son, but with his diagnosis, it may take a little

longer for him to be interested in it or be ready for it. Readiness is key with

any child.

Starting before they are ready can be stressful for both your child and you.

Trust me I know this, as I have done it myself.

Check into the TEAACH program that can provide you with structured

teaching methods that will be beneficial.

The TEAACH method uses a variety of methods to demonstrate to children

that every task can be broken down into small manageable steps.

Key elements of the program include the following:

1. Everything has a schedule.

2. There are not any events in the child’s day that are not scheduled


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3. Children are taught to use tangible prompts to indicate the next step, e.g.

an empty toilet paper roll could be used to demonstrate the bathroom

4. Tangible prompts are turned into pictures

5. Pictures are turned into story boards, or communication boards

6. Communication boards are turned into words

Children with autism need structure, even crave structure.

Some children may find that stopping their day to use the toilet is one more

transition that they don’t want.

Once you have determined that your child is ready, and by that I mean shows

an interest or at least the ability to know that he needs to toilet, use some of

his favorite items to transition.

This may be a book or other preferred item that may make the transition

easier.

Some children with autism simply don’t have the ability to know that they need

to use the toilet, at least not until they are older.


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Items that are typically reinforcing to other children, being a big boy, are not

likely to mean anything to your son.

Being non-verbal there are going to be further challenges by not being able to

tell you that he needs to go to the bathroom.

You may need to find a communication system that works for him in order to

accomplish this task.

It can be as simple as using pictures, or there is the option of sign language if

he has the ability to learn sign.

Once you determine a method that will work for your son and you, stick with it.

Making too many changes in the middle of this training will only complicate

the matter further.

Become familiar with your child’s routine.

I am sure that you are familiar with your child’s routine, but this will need to be

more specific.

To some extent, this will require you to become trained.


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You will need to be aware of when he may need to go to the bathroom and try

to intervene prior to that.

Be sure to use positive reinforcement for whatever your child attempts to do in

this area.

If he will take time to sit on the toilet, reinforce that!

One further challenge, as though you needed one, is to recognize that your

child may be fearful of the sound of the toilet flushing.

Children with autism are very sensitive to sound and this may be more than

he can stand initially.

If you notice that this is an issue, move the potty chair away from the toilet so

that he is not afraid of that sound.


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Question 6

Out of the blue my son screamed with everything in him...HELP ME!!!

Since then he has done that maybe two times when something is

hurting him...or something is going on with him that we just can't figure

out. Why does he do this and can we teach him to use more functional

speech as he doesn’t really communicate with us using words?

It is likely that your son heard this phrase somewhere and is repeating it.

The good news is that he recognizes a need to communicate when

something is wrong.

There are four main obstacles for an autistic child to learn functional speech:

1. Autistic children face challenges in trying to acquire functional speech

patterns. They are often “word deaf,” meaning they lack the ability to attach

meaning to words. Words may simply be sounds to them.

2. They are not very interested in developing communication skills. Because

they often have a dysfunctional sensory system, the challenge of hearing,

seeing, and attaching words to items is compounded.

If the process of sensory integration is not being followed through to

completion, so that information from the eyes and ears is processed and


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interpreted smoothly and conventionally, they might simply fail to ‘tune in’ to

the right auditory input.

Or they might find it difficult to ‘tune in’ because their hearing is over or under

selective.

3. For many young children with autism, speech has no more significance

than other noise, and many are more attentive and responsive to

environmental sounds than to words.

They often find rhythm and music preferable to speech.

4. Because they do not understand the separate parts of a sentence,

individual words and word combinations are not necessarily understood.

This early tendency to process sentences as a whole, rather than as a

grouping of separate words with distinct meanings makes it very difficult for

autistic children to acquire an expressive or receptive vocabulary.

Many cannot pick individual words out of a sentence unless they see them

written first.

Unlike the rest of us, they may not feel the need to put words or bits of

information into some relevant, coherent pattern or context.

If you are not currently working with a speech therapist, I would encourage

you to do so.

Finding a method for him to use functional communication is paramount.


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A speech therapist can help you identify what may be more functional.

You may find that a picture communication system can be the first building

blocks to functional communication for him.


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Question 7

I am a father of a "non-speaking autistic" daughter aged 21. Language is

restricted to noun/verb only, poorly pronounced communication, which

is constantly improving as her vocabulary and experiences expand. Her

early years were lived out in self-imposed isolation, despite our best

efforts, in a mental as well as physical manner (my wife and I are

teachers, so have fairly good communication skills). However, by

perseverance and taking risks we now have a daughter who is still

profoundly autistic but is able to live a semi-independent life, obviously

with 24 hour care, away from her home environment. Her sporting

activities include rock climbing, which she undertakes in a fearless and

powerful manner, yet not without caution (an activity that encompassed

two years of Sensory Alignment Therapy in two sessions!). She is also

an accomplished swimmer who is completely at ease, or more

accurately at one, with water as an environment; which was apparent by

her instantly taking to sub-aqua (tanks, fins, etc.) in the pool. After this

outburst you may wonder what the question is. Unfortunately there is

no universal answer to any question about autism and its effects as all

autistic individuals are different. The only question that should raise

itself to parents or individual caregivers of autistic individuals, and that

should be:" How am I, under any given situation able to maximize the

potential of the individual, in a complementary manner, thereby enabling

the person to achieve and enjoy his/her achievement?"


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First, let me congratulate you on your efforts and undying support of your

daughter. You have taken large steps to ensure her potential is being met.

The focus on communication, trying to make it functional even if it may not be

her first choice, has provided her with the means to be semi-independent.

Even though an individual does not express themselves verbally, being able

to understand more of what people say to her will help to alleviate some of the

frustration that normally occurs in the absence of verbal communication.

Secondly, providing her with an outlet for her sensory needs by rock climbing

benefits her in ways that are not necessarily obvious.

You touched briefly on one of the aspects of having a child with

developmental difficulties, that parents so often struggle with, risk-taking.

Each of us takes risks every day. We take risks in moving to a new home, or

changing jobs, or buying a new car.

These are normal events that we all do in order to try to better our lives.

It is often difficult to balance those risks with the fact that you have a person

who is vulnerable.


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But vulnerable people need to be exposed to risks too, in order that they may

grow and flourish.

Of course, we do want to minimize the risk, but without it, people simply don’t

move beyond where they are.

As I am sure you are aware, happiness or achievement in the life of someone

who is autistic is not going to present itself the way that it does to you and I.

That doesn’t mean it isn’t present only that it may be interpreted differently.

It sounds to me like you are maximizing her potential and providing her with

self-achievement.

It may not be readily apparent, but without it, you would know first hand. You

are meeting your daughter’s needs and then some.

Continue to expose her to things that may be of benefit to her, even if it is not

immediate. Continue to provide her options and you will continue to see her

grow.


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Question 8

I have a brother with autism, my parents never accepted this and never

treated him differently than me, today he is 15 years old and I would say

that he is and seems very high functioning in every way. He works, goes

to normal school and also has friends. Could the effects of how a child

with autism is treated by mainly his family have an enormous effect on

his development?

Your brother is very fortunate. Not every situation would turn out this well.

Research tells us that most children with autism need a variety of

interventions in order to develop language, play and communication skills.

So the way that your family treated your brother certainly has a lot to do with

his success.

Your brother was probably expected to behave the same as you and follow

the same guidelines.

In addition, he was probably exposed to the same social interaction as you

were and fortunately he learned to socialize with the rest of the family acting

as models without specific interventions or training.

There are some reports of children having “recovered” from autism, but there

is a great deal of controversy surrounding those specific situations.


40


Autism has always been defined as being the result of insult or injury to the

brain, which a person would not recover from.

However it seems likely, that for some children the original diagnosis was

inaccurate.

Also some children with Autism seem more able to develop functional

language at an early age which in turn helps them to socialize and join in with

the activities around them.

Whatever the reason your brother is very fortunate to have made such

fantastic progress and also have the support of such a great family!


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Question 9

My grandson, who is 2, has a lot of signs of autism so why has he got

them but not his twin sister who seems to be developing normally? He

is having all the tests now and I am trying to find out all I can about

autism so I may be able to help his parents with dealing with this

problem. We are all pretty scared about it and very worried. Please help

us!

Despite a great deal of research, the cause of autism remains very unclear.

Statistics have shown that boys are 3-4 times more likely to be autistic than

girls, which may explain some of the reasons that your granddaughter does

not appear to be affected.

Some studies suggest a genetic influence while others suggest environmental

factors.

You are taking the right step in learning all you can about autism.

There is a great deal of information out there and learning will help relieve

some of the fears that you are probably experiencing.

While you are learning, keep in mind that every child with autism is different,

but most can benefit from similar types of therapy.


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Early intervention is key to learning what you can about your grandson and

learning what will work best for him.

We do know that autism is a neurological disorder, which means that it is the

result of insult or injury to the brain.

It will present itself differently in every child, but there is generally a persistent

struggle with communication and social skills.

These are areas that you can effectively help an individual with.

Here are some websites that you can visit for further information:

www.autism-society.org

www.firstsigns.org

www.autismlink.com

www.autismspeaks.org

Each of these sites will also provide additional links.


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http://www.autism-society.org/

http://www.firstsigns.org/

http://www.autismlink.com/

http://www.autismspeaks.org/


Question 10

We have an autistic grandson we are raising. As of the last year he

seems to have reverted back to his old behavior. Is there anything we

can do to help him achieve to a higher standard again? Many of his

behaviors are childlike again.

I am not sure how you came to be raising your grandson, but applaud you for

your efforts.

If he has been with you a long time, you might want to consider what things

were in effect in the past that resulted in challenging behaviors and assess if

those things are in place again.

When he came to live with you, was it a traumatic event being separated from

his mother?

It is not unusual for an individual with developmental disabilities to revert back

to challenging behaviors that worked for them in the past.

You may need to start at the beginning again and evaluate why and when

these behaviors are occurring.

Are there stressful events going on in his life?

Have there been changes to his routine lately?


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In order to determine why the behaviors are occurring you may need to track

the behaviors for a week to a month and identify the ABC’s.

Antecedent – whatever occurs immediately preceding the behavior. Was it a

request? Was it an interaction?

Behavior – identify whatever behavior is occurring. You may need to

separate different types of behavior in order to be effective.

Consequence – what occurs immediately following the behavior. Does he get

a response from you or others? Is there a termination to the activity that was

supposed to be occurring?

Once you have identified some possible reasons the behavior is occurring,

you can evaluate some replacement behaviors.

Replacement behaviors need to meet the need of your grandson, but hopefully in a more appropriate way.


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Social Issues


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Social problems are a big issue for all families with an autistic child.

The complex make-up of even the simplest social situation that we don’t think

twice about (e.g. going to the local store) can be an absolute mine field for the

autistic child and his family.

We will start this chapter by looking at how best to support your child if you

are at church together on a Sunday.

Then we will look at how an autistic child sees social situations and practical

tips you can use to help him to improve in this area.

The chapter concludes with an investigation into coping with a number of

challenging behaviors displayed in the community by an autistic teenager.


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Question 11

My child is six years old and he has autism. We have a lot of support

from our church and take him regularly with us to the Sunday service.

Only recently he started singing or rather humming our church songs.

But when he is in church and he is annoyed he will bang his head on the

wall or the kneels. We want to help him improve his behavior in church

and not to react in this way because we want him to grow up and be a

part of our community.

You are on the right path by encouraging him to participate in the ordinary

activities that everyone else does.

You may need to monitor his behavior a little more closely and identify any

precursor behaviors that may occur prior to the head banging.

Precursor behaviors are small signs of agitation that may cue you to

something bigger that may be coming.

Does he start getting fidgety or make sounds prior to that?

If you can identify those precursors, you can remove him prior to the behavior.

Children with autism have hearing that is much more sensitive than the rest of

us can imagine.


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The church setting in itself may be to over-stimulating for him with the music

and the number of people.

You may need to shorten the period of time that he is expected to remain in

church until you have his behavior more controlled.

If you can identify that the music is what is setting him off, you may want to try

headphones which will reduce the noise volume to him.

Continue to try to involve him in community activities so that he will know what

is expected of him.


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Question 12

How can I help my son learn to interact with others who do not have

autism? As a high functioning autistic person myself, I find it difficult to

guide my son through social interactions?

As you know, social skills and interacting with others are one of the greatest

challenges for the autistic child.

You are taking the first step, which is recognizing that this is something he

needs.

Make sure you create opportunities daily for interaction to take place.

Below is a six step process that you can work through with your child.

1.Identify what your child’s current social skill functioning level is.

Does he have the ability to communicate?

Does he have challenging behaviors that are preventing interaction with

others?

Identify his strengths and his weaknesses.


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2. Identify if the issue is not having the skills to interact or if he simply isn’t

putting them into action.

Does he have the ability to initiate interaction and simply doesn’t care to or

does he not have the skills to initiate interaction?

If your son does not have the skills to initiate interaction, then instruction in

social skills is the next step.

3. Social stories provide a method for the child to learn interactions that he

can generalize to other situations.

Social stories must also be presented at the level your son is at.

There are many resources that you can find on-line that could assist in this

area. Check out www.autismstuff.com

4. Peer mentoring can be beneficial. Try to use someone that is already in his

social circle, other students in the class, friends.

5. Role playing can be used to address specific interaction skills.

You can ask your son to initiate interaction on a certain topic and then

practice interaction skills.


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http://www.autismstuff.com/


6. Whatever direction you decide on, prepare to modify things as you go.

There is not one specific method that will work for every child.

You may choose to involve a speech therapist. A speech therapist could

provide some alternative communication systems that may make your son

able to use functional communication.


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Question 13

How do you address the following behavior of a 14 year adolescent with

autism; pulling the clothing collar of strangers on the bus/taxis, or those

of his family members or even passerby without letting go?

Before trying to eliminate the behavior, you will have to determine what the

function of the behavior is.

Behaviors occurs for one of four reasons:

a) to get something

b) to avoid something

c) because of pain

d) to fulfill a sensory need.

Lets beak this down and see what may be happening here:

a) The individual may be trying to get attention. If this is the case,

then teaching them a more appropriate way of gaining attention,

i.e. greeting someone with a handshake or teaching them some

social skills would be appropriate.


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b) If they are trying to avoid something, it may be the simple

presence of another individual, it may be the situation.

Try to maintain a consistent routine for this individual and

prepare them with visual and/or verbal cues that there will be

changes.

If they successfully interact or behave appropriately, provide a

prompt reinforcement for that behavior.

c) If it because of pain, it may be the noise that is occurring at the

same time.

What does not seem like noise to you and I may sound like a

tornado to a person with autism.

Again, teaching them to communicate that noise or providing

them with a way to avoid the noise, i.e. noise canceling

headphones.

d) If it is to fulfill a sensory need, it may simply be that they want to

touch the clothing of the other person.


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In this case, you will need to provide them with appropriate

sensory input, i.e. different textures to touch and perhaps even

giving them something to hold onto.

The important thing is that you do not try to eliminate the behavior without

establishing the function that it serves and then providing a replacement

behavior that is appropriate.


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Education and

School issues


56


School is another big part of the lives of autistic children and their families.

The right school that takes the time to understand your child can be an

amazing experience for all, but the wrong school can cause major difficulties.

We start off by outlining the impact on autistic children of different stimuli in

the room such as lighting, colors, furnishing and how to pick the best ones for

your child.

Next we explore the relationship between Applied Behavioral Analysis (a type

of treatment/therapy) and class room experience for autistic children.

Then we give practical solutions for a family with a 16 year old autistic son

that is having to be taught at home due to health problems, and is getting very

bored.

And finally we finish with recommendations of good suppliers of visual

communication aids for autistic children.


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Question 14

We are a Centre that provides respite services to disabled children and

we want to decorate and refurbish our lounge area. Please can you tell

me what colors patterns, designs, layout are autism friendly.

Fluorescent or harsh lighting can hurt the eyes of a person with autism.

Many individuals say they can see the lights flickering or hear the lights hum,

which can be very distracting.

Due to these difficulties it is best to use soft lighting or deep colored light

bulbs where possible.

Adjustable lighting in some rooms can be calming. It has been suggested that

it is best to avoid using slatted blinds, particularly vertical ones, as these are

distracting and may become the focus of repetitive behavior, such as a person

constantly moving their head to create flickering sunlight.

Blackout curtains can also be used.

If the person with autism has a tendency to pull on curtain rails, curtains can

be held up with Velcro.

Plastic stick-on covering can also be placed on the windows which will give

privacy while letting some light in.

58 Children and adults with autism can find it difficult to filter out noises that other



people may be able to ignore as being background noise.

Furnishings can help to reduce noise levels in your home.

For example, carpet or soft flooring may be better than laminate flooring which

can be noisy to walk or play on.

These sound-deadening furnishings can also create a feeling of comfort.

Furnishings should always be a plain color, as patterns can be confusing to

walk across and may increase anxiety.

Some individuals may become fixated when looking at flooring.

Individuals with an ASD can become overwhelmed by subtle smells that you

may not even notice, such as someone's deodorant, perfume, smells of

fabrics etc.

You can use a background fragrance/aroma to block the intrusion of

uncontrollable smells.

It is generally accepted that low arousal colors such as cream (not yellow or

white) should be used for walls and patterned wallpaper should be avoided.

Plain painted walls can also eliminate the possibility of unplanned wallpaper

stripping.

Further, it has been suggested that people with an ASD find it helpful if

furniture is kept to the sides of a room and the central space is kept clear.


59


Using colors that distinguish the walls, floors and furniture makes rooms

easier to navigate.

It can be useful to store toys, games etc in big clear plastic boxes so that they

can be easily stored away when not in use, leaving the room less cluttered.

This can help concentration and gives you the opportunity to change things

round when needed.

Storing boxes on high shelves can also promote and teach the importance of

communication, such as the need to ask for help.


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Question 15

Are the people that work at school with autistic children well prepared,

because the children who follow Applied Behavior Analysis improve and

recover? Why with 6 hours at school don’t they achieve the same

results?

Applied Behavior Analysis (ABA) is a process of studying observable behavior

and then modifying the environment to determine the potential causes of the

behavior and also potential solutions.

It is a long slow and labor intensive process.

Additionally there is some controversy in creating a situation and teaching

skills that no longer make challenging behaviors necessary, i.e. skills taught

are very ‘situation specific’ and cannot easily be generalized.

Schools face a number of challenges in trying to make effective changes in

behavior, including time constraints where teachers don’t have enough time

for each individual child, in order to make effective changes quickly.

Secondly, there are external forces at work that affect the programming of

children.


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Other children within the classroom can have an effect on an individual’s

behavior, in other words the situation is fluid and as we know change is

difficult for a child with Autism.

Finding adequate resources can also be a challenge for any school program.

ABA has to be applied in every situation, consistently, across all environments

for it to be effective.

If the school devises a behavior support plan, that plan has to be incorporated

at home, and in the community to have significant effects on the behavior.

Over the longer term studies have shown that many children with autism do

make significant progress in their school settings and learn essential life skills

along the way.

If however you have immediate concerns about the school, I would

recommend you meet with them and discuss plans for the child, and what

programs they currently have in place.


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Question 16

My son is diagnosed a long while ago as a child with borderline autism.

Now he is 16 years he has developed seizures and is receiving

treatment. However, he is off school a lot and is getting bored in the

house, what I can do to help him?

Try to establish a routine for him within the house, if he cannot attend school

all the time.

Routine is very important for people with autism, no matter what their age.

Adolescence for any child is difficult. They are trying to establish their place in

the world.

Your son, having autism, may have additional things to deal with.

Try to create a situation where he can continue to work on his school work

while at home and continue to participate in activities that are meaningful to

him.

Regardless of the individual developmental route, most children with autism

start realizing that they are not quite like others at some point during their

adolescence.


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Once the adolescent realizes that he has significant difficulties in conducting

social relationships compared to his peers, he needs deal with this loss, just

like dealing with another loss.

Understanding the thoughts, feelings and behavior of an adolescent with

autism is the necessary first step in helping him out and being there for him.

Considering this coping process in a few stages may make the caregivers’ job

easier.

The stages are the same as those that any individual who grieves

experiences.

Most commonly, the adolescent will not go through these stages one after

another, but rather display a larger or smaller aspect of each at any given

time.

This is a painful process for not only the adolescent but for others who care

for him as well.

Parents may find themselves compelled to forget the whole thing and act as if

nothing is happening.

Well, we are all tempted to avoid pain and denial is an excellent pain killer.

The good news is, as much as the denial is contagious, the courage and

strength are too, and seeing his parents dealing with the pain calmly and

matter-of-factly will encourage the adolescent to talk about his anger and

frustration.


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This will in turn help the adolescent get closer to the acceptance and

adaptation:

It may also be beneficial for you to talk with him and ask what other skills he

may want to work on, things that may make him more independent in the

future, i.e. shopping for personal items, daily household chores, using public

transportation.

These types of activities are worthwhile and may fill the void that he is

currently experiencing.


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Question 17

I need to find a supplier for visual aids in the UK. My son has very

limited speech and becomes very angry when he can't communicate

with me. They would need to be hard wearing or laminated.

Visual support aids can be highly effective tools for increasing levels of

communication and independence in children with autism, who often have

difficulty interpreting spoken language and non-verbal facial expressions.

Visual support aids can be used in all kinds of everyday situations, from

labeling - for example, sticking a picture of a dinner plate with a knife and fork

to the chair in which the child sits at meal times - to putting together a pictorial

activities schedule for the child to refer to.

A host of places offer symbols and drawings. Some examples are:

• Microsoft Word: common symbols are available in the Wingdings font

(so you can make your own free)

• Widgit Software Ltd http://www.widgit.co.uk

• Pyramid Educational Consultants U.K Ltd http://www.pecs.org.uk/

• Makaton http://www.makaton.org

There are other websites for symbols/pictures too:

• www.do2learn.com - a useful website which has printable blank

schedules and picture cards.

• www.symbolworld.org/


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http://www.widgit.co.uk/

http://www.pecs.org.uk/

http://www.makaton.org/

http://www.do2learn.com/

http://www.symbolworld.org/


• http://www.enchantedlearning.com/Dictionary.html

• http://trainland.tripod.com/pecs.htm

• http://www.usevisualstrategies.com/pixtl.htm

• www.ace-centre.org.uk/html/resources/symbols/res02.html

The following books will also help you to come up with some ideas.

1. Everyday Education: Visual Support for Children with Autism Publisher:

Jessica Kingsley Publishers (15 Dec 2006) ISBN: 1843104571

(The authors describe how visual support aids can be used in all kinds of

everyday situations )

2. Savnar, J.L.& Smith Myles. B. (2000) Making visual supports work in the

home and community: strategies for individuals with autism and Asperger

syndrome. Shawnee Mission , Kansas : Autism Asperger Publishing Company

These books are available from The National Autistic Society's catalogue

online www.autism.org.uk/pubs or by ringing their book distributor, Central

Books, on 0845 458 9911.

Please also contact The National Autistic Society Autism Helpline on 0845

070 4004, open 10.00am-4.00pm Monday-Friday, or email

[email protected] if you wish to find out more information on making

and using visual supports.


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http://www.enchantedlearning.com/Dictionary.html

http://trainland.tripod.com/pecs.htm

http://www.usevisualstrategies.com/pixtl.htm

http://www.ace-centre.org.uk/html/resources/symbols/res02.html

http://www.autism.org.uk/pubs

mailto:[email protected]


Help, Treatments

and Support


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Now treatments and cures can be a very controversial subject in the world of

autistic spectrum disorders.

There are various people and programs in the world who claim to be able to

“cure” autism and make other such very bold statements.

We will give you the lowdown on different therapeutic approaches for your

autistic child, starting off with Speech Therapy and the use of medication.

Then we explore questions about cures for autism and outline the main

professionals who can help in treating your child.

The issue of communication has been raised by many parents and we offer

some easy-to-use techniques for helping to improve your child’s

communication skills.

And finally we look at a specific child who is constantly playing with his saliva

and offer advice to the parents in this situation.


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Question 17

I just found out yesterday my son has autism. I don't even know the first

thing to do. Is there medicine to help him start talking, I am going to try

to find a speech therapist here so we can get that started. What else can

I do?

I’m sure you are feeling overwhelmed right now. There is a lot of information

to take in and a lot of resources to help you do that.

Here are 5 easy steps to get you started:

1. Try to arm yourself with information about autism. While you are doing this

keep in mind that although your child has been diagnosed with autism, each

child is an individual and will have differing abilities within that diagnosis.

2. Try to locate a support group in your area, or at the very least join an on-

line community. There is not a feeling you are having right now that another

parent hasn’t already had.

They can be a great resource for you as well. Many have already gone

through these experiences and can share their information with you.

3. Selecting a speech therapist is a great place to start. You may want to talk

to your pediatrician who can help you with finding resource services.


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4. As far as medication, this is a very individual process. Children with

autism sometimes need medication to help deal with behaviors, so that

they are better able to fit in with their peers or society.

But this is not something you want to jump into without being aware of the

potential side effects. Enlist the help of a psychiatrist for this.

5. Take this process one step at a time. Overwhelming yourself or your child

is not likely to benefit either of you.

These are some websites that can help you get started:

www.aboutautism.com

www.autism.com

www.autism-society.org

After learning what you can, decide which priorities need to be dealt with first

and go from there.

Question 18


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http://www.aboutautism.com/

http://www.autism.com/

http://www.autism-society.org/


Is Autism Treatable? Are there any Recovered Autistic Children? If so

where are they and how did they recover?

Autism cannot be cured but there are some aspects of autism that are

treatable.

With the appropriate intervention, they can learn increased communication

skills and social skills.

There are articles that talk about children who have recovered but it is

controversial, especially in the manner in which the disorder is understood.

Autism is understood as a neurological disorder for which there is no cure.

Some claims that autism has been cured appear to be the result of intensive

therapy and changes in diet and environment that may provide positive

results.

An example of this is the Son Rise Program (the website for them is

http://www.autismtreatmentcenter.org/). I recently attended a lecture by Raun

F. Kauffman who speaks around the globe about the program.

He claims to have been diagnosed as severely autistic at 18 months old and

“cured” of autism by the intensive teachings and input of his parents in his

early years.


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http://www.autismtreatmentcenter.org/


From this experience the family launched The Son Rise Program which

claims to have worked with over 22,000 parents and professionals in the

world of autism since.

There has been a great deal of cynicism and controversy about their claims.

Two of the major issues being the validity of Raun’s original diagnosis and the

apparent lack of outside studies as to the success of the program (although in

a recent telephone conversation one of their staff ensured me that such a

study is currently being conducted).

My personal take is that the program seems to use a great deal of common

sense behavioral techniques, psychological techniques and dietary

approaches that will certainly help the autistic child and parents.

As they admit in their literature they will not “cure” every child but always

make some improvements in every child.

The other point I would make is that it is an intensive program that involves

the parents doing a great deal of work with the children over many months

and probably years.

For parents who have got the time, energy and ability to do this I would

certainly recommend that they look at it further for themselves and decide if it

looks right for them.


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But clearly for many parents who do not have all of these abilities I would say

that it will probably be just a pipedream that would be unlikely to help, and

may even give you unfair and unrealistic expectations.

Because the crux is that for it to work (like anything really) you must follow the

teachings accurately and consistently. It is no overnight miracle and, to be

fair, is not billed as this either by the Son Rise people.

My other issue is the language of “curing autism”.

Whilst I know that for parents that it’s frustrating and challenging to have a

child with autism.

My emphasis is that autistic children are just “different” and not “wrong” or “ill”

and to talk about” curing autism” indicates that autistic children must be

“wrong” or “ill” and need a cure.

Whilst I am 100% behind approaches to help both the child and parents to

improve their quality of life, I also think that every individual child deserves the

love and respect that they deserve for who they are as children.

OK rant over and back to the point……………..!


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An autistic child does have the ability to learn, but the environment and

methods must be consistent with their needs.

We do have the ability to make a difference in their lives with the proper

intervention and support.

For the autistic child, we should focus on those support systems that will

enable them to live a life as close as possible to normal.

Interventions that have been tried and reported to be successful:

1.Changes in diet, with a focus on removing foods that the child may have an

allergy to. For more information visit www.autismrecovery.com

2. Behavior modification can help a child reduce inappropriate behaviors

and teach them a variety of functional behaviors designed to meet their

needs. For more information visit www.autism-treatments.com

3. Sensory integration therapy teaches us how to help integrate the child’s

senses, so that they can find more order in the world in which they live. For

more information visit www.brighttots.com

4. Speech therapy using a variety of communication techniques will provide

functional communication for the child. For more information visit

www.polyxo.com


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http://www.autismrecovery.com/

http://www.autism-treatments.com/

http://www.brighttots.com/

http://www.polyxo.com/


Question 19

Is there any cure for autism?

There still remain many questions as to the cause of autism. Without

understanding the cause and the condition itself, it is not likely that there will

be a cure soon.

But there are steps we can take to ensure a full life for the child with autism.

First, early intervention will ensure that we are meeting all the needs of the

child.

This may take the form of diagnosis, but also the inclusion of professionals

who are well versed in the treatment options for a child with autism.

The different professionals can be:

1. A speech therapist can assist in the development of a communication

program, using verbal, sign, or pictures to communicate.

2. An occupational therapist that is knowledgeable in the area of sensory

integration can assess if the child is hypersensitive or hyposensitive and

provide some methods to deal with that.


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The autistic child struggles with taking in sensory information that the rest of

us use on a daily basis. They have a difficult time organizing that information

for later use.

A sensory integration program can benefit them by providing techniques that

can help them understand sensory information and organize it.

3. An educational psychologist may be helpful in resolving challenging

behaviors if there are any.

The autistic child does not want to display inappropriate behaviors, but may

not have any alternative behaviors that are functional.

For example, if you choose not to participate in an activity, you simply say so.

The autistic child may not be able to communicate that as easily as others,

and with no other options, will display inappropriate behaviors as a response.

Given the appropriate means to communicate and training in when and how

to use that communication can be beneficial in reducing challenging

behaviors.

4. A good pediatrician can make sure the child is feeling their best so that

other health issues do not interfere.


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5. A specialist social worker can help to work more with the emotions and

feelings of the family (including siblings), look at practical support for the

family (e.g. respite and financial help) and also help to co-ordinate all of the

other services.


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Question 20

I have a 3-year-old son who doesn’t speak although his hearing has

been checked so we know he can hear! He doesn’t seem much

interested in communicating but prefers to play with his own toys a lot.

Should we take him to see someone about this?

As you know, there are certain milestones that any child should achieve and if

they aren’t achieving those milestones, such as communicating, it is definitely

something that you need to check out.

Speak with your pediatrician about other resources that may be available to

you.

If he does not have a diagnosis at this time, it is not necessarily something to

panic about, but you need to check all your bases to make sure.

Children need to socialize with others to increase their communication and

socialization skills, so perhaps joining a play group would increase his desire

to communicate.

If your child does not begin communicating, it would be worthwhile to see a

speech therapist who may be able to identify the problem and help develop a

plan to increase his ability to communicate.


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All children develop at different rates, some excelling in certain areas, while

some skip others.

Some children don’t show a “need” for communication skills at an early age.

There are some steps you can take to encourage communication in your

child:

1. Share books and visually presented information with your child as often as

you can .

2. Talk with your child about their day in short and simple terms, using actions

and mimes to where necessary to help them communicate with you.

3. All shared play activities can provide an additional opportunity for

communication.

For further information about developmental milestones, see the following

site:

www.howkidsdevelop.com


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http://www.howkidsdevelop.com/


Question 21

What percentage of nonverbal autistic children begin to talk at a later

time? My 7 year old son is nonverbal; however he does say a hand full

of words every now and then. The word he says the most is “mom”, of

course I love that. My son can also say “no”, “hi” and “papa”...and a few

other words but he doesn't say them often.

There is no magic number that will identify when autistic children begin to talk

as they are all so individual.

The important thing is providing your child with as many options to

communicate as possible.

See if your school has a speech therapist that can assist you with an

appropriate means of communication.

PECS is a method that may be beneficial to your son. It is a system using

pictures that allow them to communicate.

There has been some controversy whether this enhances speech or creates a

situation where they don’t need to verbalize in order to be understood.

However, recent studies suggest that when used appropriately, PECS may

actually increase a child’s verbal skills as well.


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There are many advantages to PECS. For example, a picture can be

understood by anyone and is not limited to only those that understand sign

language.

It is also a method that can be generalized throughout their life and functional

as well.

More information can be found at http://www.pecs.com/

The important thing is providing a method that is functional for your son.

Barriers to communication create all sorts of struggles that no one needs.

If your son’s school does not have a speech pathologist, talk to your

pediatrician or social worker, if you have one, to identify the next resource for

you.


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http://www.pecs.com/


Question 22

Why do autism kids play with saliva? How can we help them overcome

it?

Children with autism often demonstrate self-stimulation behaviors. These

behaviors are sometimes displayed to allow them to cope with the world.

Sometimes these behaviors are displayed in order to fulfill a sensory need.

You and I each take in 2 million bits of sensory information each second

This occurs in the form of sounds, lights, things we touch.

We have the ability to sort through that information, ignore what is not

important and store what is useful information.

We also have the ability to retrieve that information when necessary.

A child with autism does not have the same ability to deal with information as

we do.

They take information at the same rate but don’t have the ability to store it in

an orderly fashion and retrieve it later for use.

Their sensory systems do not operate efficiently.


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Therefore using self-stimulation behaviors allows them to either deal with the

overflow of information coming in, or provides them with a means to seek out

sensory input when there is not enough being provided

It will not help the child to simply stop these behaviors without first providing

them with an alternative.

If you can provide the same type of stimulation with something that is more

appropriate, i.e. hand lotion, then the child’s needs may be met.

If that is unsuccessful, you can allow them to participate in the chosen

behavior but use a timer to limit the amount of time they spend doing so.


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Medical

Questions


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We received a lot of emails from families asking about all kinds of medical

issues linked to medicine; so we have written this chapter to cover them.

Firstly we outline the current research and evidence into whether autism is

hereditary and cause by genetics, following numerous questions on this

subject.

We next explain the differences between Asperger’s Syndrome and High

Functioning Autism.

Then we look at the statistics and studies into the numbers of autistic children

in the world.

We also cover the question of why autistic boys are more prevalent than girls

and the life span of autistic children.

Possible causes of autism such as mercury poisoning and immunization are

also discussed in depth.

Then we go on to look at a number of possibly related health conditions such

as Down’s Syndrome, ADHD, microcephaly, bulimia nervosa, Morton toe and

hearing disorders.


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We finish up this chapter with a look at late diagnosis in children, the possible

effects of steroid abuse in causing autism and the parts of the brain that are

affected in autism.


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Question 23

Can autism be inherited and if so what is the likelihood this could

happen in a family where there is already a diagnosis of Autism?

The cause of autism still is not clear, despite decades of research.

Scientific studies recognize that there is a primary brain dysfunction and a

genetic component.

It is suspected that there is more than one gene that is responsible for autism.

Some studies suggest that 30%-50% of autism cases are inherited; which is a

wide gap and mainly based on information that other family members

appeared to displayed autistic characteristics.

There is research that suggests there is a higher probability of later children

having autism in a family that already has one child diagnosed with autism.

Research that has been completed suggests that there more be more than

one gene responsible for autism. However, genetic counseling is something

to consider if there are concerns.

Further links to this information:

http://autism.about.com/od/whatisautism/p/autismcauses.htm

http://www.chg.duke.edu/diseases/autism.html


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http://autism.about.com/od/whatisautism/p/autismcauses.htm

http://www.chg.duke.edu/diseases/autism.html


http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=299&a=3578


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http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=299&a=3578


Question 24

What is the difference between those with High Functioning Autism &

Aspergers Syndrome?

Autism is diagnosed on the basis of abnormalities in the areas of social

development, communicative development, and imagination.

This goes together with marked repetitive or obsessing behavior or unusual,

narrow interests.

High Functioning Autism (HFA) is not a clearly defined diagnosis. Rather, it is

a

label given when someone meets the diagnostic criteria for autistic

disorder but is able to speak and has an average or above average IQ.

Aspergers Syndrome is a type of high functioning autistic spectrum

disorder in which there is no clinically significant delay in language and an

IQ of at least average (often higher).


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Although people with AS learn to speak at or near the usual age, they usually

have an odd style of speech and difficulties with nonverbal communication.

Many people with Aspergers Syndrome have fine and/or gross motor skills

delays although this is not necessary for a diagnosis.

People with AS also frequently have difficulties with math and with

organizational skills.

The primary distinction between High Functioning Autism and Aspergers

Syndrome is early development – primarily of language.

High Functioning Autistics are often mislabeled with Aspergers Syndrome if

speech is adequate at the time of assessment.

If an individual with autism has an IQ in the normal range (or above), they are

said to have high-functioning autism.

If an individual meets all of the criteria for high functioning autism except

communicative abnormality/history of language delay, they are said to have

Aspergers syndrome.


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Question 25

Does autism affect more people who live in the developed world I have

heard that there are less instances of it elsewhere? Is there a

demographic bias?

The numbers on autism are primarily collected in the U.S., the UK and

Australia and are based on varying statistics including the following:

The number of people who have autism is around 1 in 500 to 1 in

2,500 depending on which criteria the researchers use.

The rate of new cases is about 1 in 166 live births.

It is three to four times more common in boys.

It has increased in the US by 172% in the 1990s and by 250% in

Northern Ireland in the last five years.

The rate, according to the Autism Society of America is the same

around the globe.

The rest of the countries’ numbers are calculated based on the statistics from

the countries we do know.

This is, of course, making the assumption that the developing countries have

the same rate of autism as we do, which is what is being assumed.

Although doctors don’t actually know that the rate of autism is really different

from that of other countries or even if the rate of autism is increasing as fast

as the statistics really say.


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Let’s look at another disease as an example to understand this.

Thirty to forty years ago, there were many children with the diagnosis of

“mental retardation”, which was a catchall term for kids who didn’t pass the IQ

tests. There were lots of children with mental retardation.

Now, there are very few children who are mentally retarded. Instead, doctors

have determined more specific ways to find out that some of these kids have

autism, some have cerebral palsy, some have mitochondrial diseases, etc.

The way we have come to think about these “new diseases” is what has

changed, rather than the actual diseases themselves.

There is no evidence that there is a real difference in the world populations

because the same tests aren’t being used to check for the presence of

autism.

Now, if autism is genetic as some doctors are coming to believe, it certainly

could favor boys over girls and it could be different based on the way the child

is tested.

It could favor some races or populations over others.


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Since there isn’t any good blood test for autism, there is no simple way to

diagnose it.

This makes it really hard to say for sure if there is more autism in developed

countries than in undeveloped countries.


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Question 26

Has autism always been about? How does it appear that there are more

autistic children than ever before? Why can’t it be cured with medicine?

Medical science has described cases we now know as autism as early as the

1800s.

The word autism came into medical being in 1912 and the first scientific paper

on autism occurred in 1943 by Dr. Leo Kanner; who had noticed such children

for a number of years.

Medical science is a changing profession. Both the things that get diagnosed

and the things that get overlooked or called something else changes all the

time.

Autism is a disease that finally started to get “noticed” by around the 1960s—

only then, doctors believed it was caused by bad mothering and sent many of

these children to foster homes or to institutions.

Now, we have specific criteria and know that there is more than one type of

autism unlike how it used to be. Some research is pointing to a genetic

problem going on with autism.

More and more children that would have been diagnosed as “mentally

retarded” in the 1950s are being more accurately diagnosed as being autistic.


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So does that mean there are more children with autism diagnoses out there?

Of course there are.

But how many of those same children would have been diagnosed as

something else in the 1950s?

At the time autism was first described, the researcher in the 1940s thought

that 1 in 10,000 children have it and now it is believed that one in 500 children

have it.

In many cases, autistic children in 1940 would have been mentally retarded,

“different”, or schizophrenic because autism was really an unknown disease.

If you look at schizophrenia rates over that time, it has dropped rapidly

because a better diagnosis has been found.

The reason why no medication exists to help autism is because we still don’t

know what’s going on in the brain or if medication will fix it.

Some people have had success with hyperbaric oxygen therapy but the

research is just not out there to prove that it works.

If autism has a genetic part to it, perhaps gene therapy will someday make a

difference but we just don’t know enough about it yet.


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In addition, if there is a chemical imbalance in the brains of autistic children,

no one yet knows what it is or what to give to keep the imbalance from

happening.

It’s very frustrating to be only partway through the process of discovering a

disease, that’s probably always existed, and the treatment for it.

But parents of autistic children are in exactly that place with only waiting and

trying different things as an option, until researchers know more about this

disease we’ve only begun to figure out.


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Question 27

What is autism and why does it occur in so many more boys than girls?

Let’s see if we can piece together the gibberish on many fact sheets regarding

autism. Autism is a pervasive developmental disorder.

This means that

1.) It is pervasive, meaning it doesn’t come and go and holds a stable

position for a long time.

2.) It is developmental, which usually means it has to do with a child’s ability

to socialize, to speak, to take care of himself, to concentrate and to think.

3.) It is a disorder, meaning it falls out of the normal range of other children.

There can be children with very mild autism and children with severe autism.

There are actually several types of autism:

1.) Classic autism which affects the child’s ability to relate to others.

Children with classic autism are also very compulsive and ritualistic.

2.) Pervasive developmental disorder which is milder than autism.

3.) Asperger’s syndrome in which children have repetitive behaviors but

have better speech than classic autism.


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4.) Childhood disintegrative disorder, in which the onset of the disease is

later.

5.) Rett syndrome, in which mainly girls are affected with developmental

delay.

In most syndromes, collectively caused “autism spectrum disorder”, the official

cause is unknown.

Scientists are increasingly finding genetic mistakes or genetic trends in cases

of autism that lead most to believe that most problems in autism are genetic in

nature.

In Rett syndrome, the exact genetic error has been found.

So if something is genetic, why wouldn’t it affect boys more commonly than

girls?

Let’s assume that every case of autism is found to be a hundred percent

genetic.

There are lots of genetic conditions seen on boys and not on girls. They are

called X-linked disorders.

If a gene is bad on the X gene, boys only have one X gene and don’t have the

benefit of a healthy X chromosome that girls have (who have two X

chromosomes). With only a single X chromosome, boys would be affected

more than girls.


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Another situation could happen if the genetic defect came from the father of

the child and affected female sperm more than male sperm.

This would mean that more male sperm would be healthy enough to fertilize

the mother’s egg. In such cases, boys would be more likely to have the

disease.

These are the complicated issues that researchers are still struggling with in

understanding how genetics works in autism, which happens to be more than

one disorder in the first place.

Eventually, they will have it all worked out, but it may take some time.


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Question 28

Why is the Autism "epidemic" not receiving the same national attention

as the Polio "epidemic" of the 1940's and 1950"s? Today one out of

every 166 children is diagnosed with Autism Spectrum Disorder, and in

the 1940's and 1950's one out of every 3000 children came down with

polio. That was a national crisis, why not Autism?

Doctors first have to decide if something is really an epidemic or not, or if we

are just much better at diagnosing it than ever before.

In the case of autism, most researchers believe that children who would once

never be diagnosed or would be diagnosed with something else are now

being called “autistic”.

Doctors were just not very good at defining the different types of autism until

the 1990s.

Secondly, polio was an epidemic that existed before the 1940s and 1950s. It

killed or crippled children for centuries before that.

The difference between polio in the 1850s and polio in the 1950s was that

doctors were finally figuring out it was caused by a virus and that keeping

children isolated when they developed it meant fewer other kids got the

disease.


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They wanted everyone to understand that it was contagious so publicity was

high.

Add to that was the fact that they were just becoming able to give a vaccine

against polio to prevent it.

In the early 1950s, the first vaccines against polio were given—another

reason to make a big deal out of the disease.

We aren’t so lucky with autism. It has several different forms, each with its

own, probably genetic cause.

While research is being done furiously to find a way to overcome autism

through medicines or gene therapy, it hasn’t happened yet.

This means we have children with a disease that has no definite cause and no

definite cure.

Clearly the public awareness of autism is much higher in the last 20 years but

there’s no benefit in alarming people because it is something that can’t be

prevented with vaccination and can’t be cured with medicine.

Instead, the focus in autism is identifying it early and in therapies currently

available that can help autistic children.


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In most cases, it is believed that early identification and therapy will improve

the outcome of kids with autism.

This is probably why so many parents and pediatricians are trying to find

these babies and toddlers as early as possible so more children are being

diagnosed and placed in therapy than ever before.

It’s helping more children develop to their fullest potential that is, in part,

attributing to the epidemic of autism we’re seeing today.


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Question 29

Do autistic people have a shorter life span than normal people?

It’s one of the sad facts of autism that of the $90 billion dollars spent per year

spent in caring for its sufferers that more than 90% of the costs are used in

adult health care.

Statistically, there is no reason that autistic children should have a shorter life

span than normal people. The condition itself is not fatal nor does it

necessarily shorten one’s life span.

However, there can be circumstances that shorten the life of those who suffer

from the disease.

Children with autism can have higher rates of seizure disorders than other

children, leading to a risk of dying from a serious seizure.

In addition, they may be at higher risk for accidents or injuries due to their

inability to protect themselves. In some cases, their thinking can remain like

children and they can do things that put them in harm’s way.

In addition, autism patients would be unable to tell someone if they suffer from

things like stomach or chest pain. They would be unable to relay any

symptoms of disease that, in a non-autistic person, would lead to a visit to the

doctor or emergency room.


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Even high functioning autistics may not recognize the symptoms needing

medical help, which could lead to serious illness or death.

Lastly, many healthcare providers may choose to overlook testing for things

like high cholesterol, high blood pressure or diabetes.

These preventative things may go untreated so that the autistic person is

under treated for those things that could cause medical conditions like stroke

and heart disease.

When an autistic person dies from heart disease, the death certificate would

say they died of heart disease and may not even record the incidence of

autism in the patient.

This means that there is no way to tell if the autistic person died from

something that was complicated by the fact that they suffered from autism.

This practice seriously under-reports the incidence of other diseases being

impacted by having autism.

So, in a nutshell, a child doesn’t die from autism but their autism contributes to

the child ultimately suffering from other conditions that could cause a

premature death.


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Question 30

Is there a connection between autism and mercury poisoning?

There are many factors that go into possibly getting autism.

For a long time, researchers were suspicious that the increase in autism was

due to childhood vaccinations.

This was partly due to the fact that there is thimerosal used as a preservative

in childhood vaccinations. Thimerosal contains small amounts of mercury.

There is also mercury contamination in the environment—including in fish

from certain waters.

It’s also true that symptoms of mercury poisoning are similar to symptoms of

autism. A person with true mercury poisoning could have a diagnosis of

autism when he or she really has mercury toxicity.

There are some people who believe that there may be a group of people that

are more sensitive than others to mercury exposure. In other words, they

have genetic problems that make them more likely to suffer autism from

having mercury poisoning.

One of the big problems with mercury and autism is that there has been no

proof of elevated mercury levels in children with autism.

There has been no statistical relationship among autistic children who got

immunized and those that didn’t get immunized.


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Children still have autism in developing countries where mercury toxicity and

immunizations aren’t common.

In addition, children with mercury toxicity tend to get better if the mercury is

removed from their system. Autistic children wouldn’t get better if mercury was

removed from their system.

The thing that can’t yet be proven is the possibility that genetics and mercury

together play a role in contributing to autism. The results aren’t showing

anything yet but it certainly could be a possibility.


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Question 31

When will the medical profession admit that there is a link between the

immunizations and the onset of autism?

When it was first considered a possibility that the measles, mumps and

rubella (MMR) vaccination was associated with autism, many federal and

nonfederal agencies began to study the issue.

They looked at children who got vaccinated and children who didn’t. They

looked at the relationship between autism and immunizations in other parts of

the world.

Some people looked at all autism types and some looked at a type of autism

known as regressive autism that is associated with stomach problems as well

as the usual autistic symptoms.

What they found was that autism actually has its origin before a child is born

and that if a mother has rubella in pregnancy, autism can be a result of having

the disease.

Getting the shot for MMR, however, wasn’t associated with getting autism.

The rates of those who got autism were the same in the US and in Europe,

regardless of whether or not the child got the MMR vaccination.


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On June 12-13, 2000, the American Academy of Pediatrics (AAP) convened a

conference titled "New Challenges in Childhood Immunizations" in Oak Brook,

Illinois.

At this conference, parents, practitioners, and scientists presented information

and research on MMR vaccine and autism.

The AAP does not have any direct investment in the making of the MMR

vaccine and is completed without bias. No link to autism and the MMR

vaccine was ever discovered.

In answering the question, doctors and researchers took the possible link

seriously enough to study (in many ways) the issue; the result was completely

negative.

Certainly something in the environment could play a role in the development

of autism; however, that link has not yet been found.


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Question 32

Autism is a developmental problem with the brain, so why is there also

in some cases many other health problems combined with it which can

be quite severe. Are they due to the autism or just the person’s health in

general?

Autism is a developmental disorder of the brain that is felt by many experts to

be due to problems in more than one gene or chromosome and that some

environmental triggers can exist along with the genetic ones to result in

autism.

Anytime chromosomes are damaged, especially if it involves more than one,

other kinds of health issues can result.

Children with autism have a higher incidence of allergies, ADHD and

sometimes seizure disorders.

Low blood sugar, diarrhea, nasal congestion, excessive thirst and excessive

sweating have been found to also be linked with those who have autism.

Sometimes, when there is an error in a genetic area, it shows up in an area

where another physical condition is controlled.

In other words, a mistake in a gene may lead to autism and be right next to a

gene that leads to some other physical disorder as well.


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They may be physically in poor shape because of the same genetic mistake

that caused the autism.

Interestingly, Dr. R. Waring from Birmingham University in England

discovered that some autistic children are deficient in the presence of a

particular enzyme that detoxifies the body.

This would lead to the inability to add oxygen and detoxify sulfur compounds

so that natural toxins in food and normal body toxins would have a difficult

time being removed from the body.

This could lead to physical symptoms due to excess toxins in the body.

As an autistic person grows up, he or she may not take great care of

themselves when it comes to things like high blood pressure, high cholesterol

or high blood sugar.

This could lead to premature complications of diabetes and heart disease or

stroke.

If the person weren’t autistic, he or she would see the doctor more regularly

for preventative healthcare and would probably not have as many adult health

problems.


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In short, the damage to the genetic material (genes) that triggers autism

probably contributes to the development of other physical problems outside of

the brain itself.


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Question 33

Does Downs Syndrome fall under the umbrella of Autistic Spectrum

Disorder, and what other conditions are included in this term?

Down’s syndrome and Autistic Spectrum Disorder can, on occasion, look

similar but, in fact, they are very different disorders.

Down’s syndrome is a specific problem with an individual’s chromosomes

and, under a strong microscope, doctors can see that the person has three

chromosome 21s when there should be only two of each chromosome type.

It’s also called trisomy 21. This leads to physical features you can identify and

developmental delay because the brain doesn’t develop correctly.

In Autism Spectrum Disorder, the different causes of the disorders under that

umbrella are most likely related to the chromosomes too.

But so far researchers are finding only small errors in the chromosomes or

many little errors in the chromosomes—something that doesn’t show up very

well under the microscope.

Some researchers believe that environmental factors like toxins in the

environment or mercury toxicity are also related to Autism Spectrum Disorder.


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There are actually five different diseases that fall under Autism Spectrum

Disorder. They are related in that their symptoms are similar. These are:

Classic Autism, considered the most severe of the disorders.

Language is severely affected.

Pervasive Developmental Disorder, NOS: This is a catch-all term

that involves those affected kids who have some but not all of the

classic systems of autism.

Asperger’s Syndrome, which involves problems with repetitive

behaviors and social disabilities. These children tend to be more

clumsy and awkward children than those with classic autism.

Childhood Disintegrative Disorder: This involves a later onset of

symptoms in children who are normal until 2-4 years of age.

Rett Syndrome: This is a condition that usually affects girls that

develop a small head and progressively more developmental delay,

poor muscle tone and behaviors like arm flapping and hand waving. A

known chromosome problem has recently been found for this disorder

called a MecPC2 mutation.

Research is being done all of the time to identify which chromosomes are

affected and if there are any environmental issues contributing to these

diseases that can be changed.

Unlike Down’s syndrome, autistic children may have a preventable

component to their disease state but we just don’t know what it is yet.


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Like Down’s syndrome, however, the genetic part of the problem is not likely

preventable. Perhaps some day, genetic screening tests for autism will be

available as it is for Down’s syndrome.


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Question 34

Does ADHD fall under the Autistic Spectrum; there seems to be some

connections between the two?

While ADHD is not one of the five primary disorders among the Autism

Spectrum Disorders, it does seem to be related to autism, particularly to

Asperger’s syndrome.

There are two things to consider when discussing ADHD and Asperger’s

syndrome.

The first is that when you look at a list of symptoms for each of the disorders,

there is a great deal of overlap.

Some of the overlapping symptoms are:

1. Difficulty mixing with other children

2. No fear of danger

3. Throws tantrums

4. Inappropriate giggling or laughing,

5. May not want cuddling or act cuddly


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6. Overactive or under active

7. Poor eye contact

8. Impulsive; often makes careless mistakes

9. Poor gross/fine motor skills

This means that some kids with Asperger’s syndrome may get diagnosed with

ADHD and other children with ADHD may get diagnosed wrongly with

Asperger’s syndrome.

Since the two are treated very differently, some children with Asperger’s

syndrome may get medication for ADHD which likely won’t help at all.

Other kids with ADHD may not get the medication they need because they

were wrongly diagnosed with Asperger’s syndrome.

The other issue is that ADHD and Asperger’s syndrome or other forms of

autism are often diagnosed together in the same child.

In fact, ADHD is the most common disorder diagnosed along with autism.

Could this mean that ADHD and autism have some common cause?


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No one knows what causes ADHD; autism is felt to be primarily genetic with

the possibility that environmental factors contribute to the genetic ones.

It’s entirely possible that ADHD and Asperger’s syndrome are seen together

because they are of the same origin.

In one research study, children with a specific genetic problem called Fragile

X syndrome showed an extremely high chance of having both autism and

ADHD.

In this case, there is likely a common reason behind those children having

both conditions at once.

The research on the relationship between these two conditions has a long

way to go.

Perhaps in a few years our understanding of this relationship will help children

receive the best possible care for both conditions.


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Question 35

Is there a proven link between microcephaly and Aspergers? If so what

does this mean for the affected child?

Microcephaly is a condition where a child is born or develops a smaller than

normal-sized head.

A child can be born with a normal sized head that grows slower over time or

they can be born with a small head that remains small.

Some of the autism spectrum disorders, namely Rett Syndrome, are

associated with microcephaly.

In general, microcephaly is associated with problems with learning, but there

are children with microcephaly that have perfectly normal intelligence.

Asperger’s syndrome isn’t necessarily associated with microcephaly and, in

fact, some research studies indicate that children with Asperger’s syndrome

have larger than normal brains.

The condition, called microcephaly, can be associated with intelligence

problems or can be normal.


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The bottom line is that, if a child has microcephaly from any cause, he or she

can have either no impairment at all or can have serious problems with

intelligence.

There really is no way to predict how a child will turn out. Certainly the

chances of problems with development are higher in children with

microcephaly.

One interesting thing that researchers are trying to do is to see if certain parts

of the brain are bigger or smaller than average in Asperger’s syndrome.

For example, is the part of the brain that connects the two halves of the brain

(called the corpus callosum) is smaller than normal?

Are other parts of the brain are too big or too small?

Doctors hope to be able to use CT scans (X-Rays) to help diagnose cases of

Asperger’s syndrome and other types of autism.

Understanding the problems in the brain will hopefully lead to understanding

what is going on in the brain of autistic children and to the earlier diagnosis of

the condition.


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Question 36

What is the connection between autism and bulimia nervosa?

When we think of autism, we often think of little children having problems

socializing or having difficulty learning.

We forget that these children grow up and become pre-teens and teens with

difficulties in other areas of their lives.

The typical case of bulimia for children who don’t have autism involves an

overwhelming need to become thin.

The teen often binge eats or can eat a normal meal but will vomit or use

laxatives to get rid of the food as a way to maintain weight.

Children with autism who develop bulimia nervosa usually develop the

disorder for a couple of reasons.

The most common reason is that the child develops a great distaste for foods

of certain textures or flavors.

They will refuse to eat, resulting in anorexia, or will have problems with

vomiting food they don’t like.


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Weight loss and electrolyte problems can occur just like in bulimia from other

causes.

The other reason a teen with autism can develop an eating disorder is if food

becomes a source of obsession for them.

Because teens with autism have tendencies toward being obsessed about

certain rituals or other things, food can be something they choose to refuse.

On the other hand, food could be something they become obsessively

attracted toward.

Overeating, binge eating or gorging on a specific type of food can occur to the

point of vomiting.

Teens with autism who develop an eating disorder generally do not have

weight loss in mind.

If a teen begins to show signs of an eating disorder, pay attention to the

texture of the foods they are avoiding first, followed closely by taste.

Where other teens will need individual and/or group therapy, autistic teens will

need to work with increasing tolerance to textures and flavors so they don’t

refuse or vomit food.


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This type of therapy often gradually improves the autistic teen’s symptoms

and restores them to normal weight and nutritional status.


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Question 37

Are there different degrees of autism for example can a child who has

been diagnosed as autistic ever overcome it eventually in order to make

them more manageable in later life? The kid I am referring to is now 5

years and she was first suspected of having a hearing disorder?

Autism isn’t a single disease but is rather a spectrum of different diseases that

share different degrees and types of symptoms and probably different causes.

Years ago, autism wasn’t well understood so children were diagnosed as

“shy”, “hyperactive”, or mentally retarded.

Many of these children didn’t receive any treatment at all and some were

placed in foster care or institutional care.

More often than not, those children did not improve their symptoms very

much.

Changes began happening when autism was better defined and the health

care system and lay public understood the features of who had autism and

who didn’t.

The diagnosis of autism isn’t perfect yet but more and more children with even

mild forms of autism are being detected.


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Treatment has been shown to be the most effective when begun early in life,

which makes doctors more likely to diagnose autism in very young children.

Treatment of autism is directed at improving their symptoms.

Children attend therapy sessions that reduce their feelings of sensory

overload, control their symptoms and promote positive behavioral and

adaptive skills.

Some children need medication for seizures, hyperactivity or anxiety—all of

which are geared to reducing symptoms and maximizing the chances of the

therapy sessions actually working.

Many children have started such autism therapy at severe levels of

functioning and have gradually improved in functioning to the point where it

would be difficult to tell that they had autism at all.

Certainly, the milder cases get to the point of having almost no symptoms

after therapy than do the more severe cases.

Some children have physical problems like seizures that respond to

medications but don’t go away altogether with autism therapy.


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The latest recommendation from medical sources is that children start autism

therapy as soon as the diagnosis is made and that younger children achieve

higher degrees of later functioning than older children.

There are some clinics that offer pediatric intensive therapy for autism, which

involves short courses of daily therapy designed to make developmental

strides much faster than with ordinary therapy.

Still, therapy can take years and sometimes the progress is slow. This is

linked to my earlier point in the book on The Son Rise Program.

There probably is no good reason not to participate in therapy, no matter how

mild the autism is.

Autism therapy clearly works and carries the potential to reduce the degree of

impairment these children experience.


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Question 38

Can autistic children have a father who is suspected of being autistic

but never diagnosed? What if the paternal grandmother shows signs of

being mentally limited?

Autism is strongly believed to be related to heredity and, in families that have

one child with autism, there is a 2-8% chance of another family member

having the disease itself.

Remember that autism is actually a cluster of diseases and some types of

autism may be more likely to be inherited from parent to child than others.

In identical twin studies, there is a 60% chance of both twins being affected

but no greater chance if the twins are not identical.

Unfortunately, back in the days when the paternal grandmother lived, autism

was poorly understood and the grandmother with mental limitations could

have easily been autistic but no one understood the disease well enough to

diagnose autism.

Even in the era of the father, autism cases were often not done discovered

unless the situation was very severe.

Now, lots of doctors and pediatricians know to be on the lookout for the signs

or symptoms of autism.


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Children are being diagnosed at younger and younger ages, making

treatment available to children at times in their life when it can be of the

greatest value.

This explains why there is a difference in the fact that the children are

definitely autistic, the father was suspected of being autistic and the

grandmother was just “mentally limited”.

As of this time, there are so many different genetic reasons why a child might

develop autism that no single test is available that can provide advice for

prospective parents wondering about their risks of having a child with autism.

Still, doctors are advised to provide couples with information on their odds of

having a baby with autism based upon the degree of autism in their family

history.

A visit with a genetic specialist can be greatly helpful to couples who have

autism in the family and want to know what they can expect for their future

children.

Some day, specific tests will be able to be done to see if a person has autism

or is a carrier for autism.


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It probably won’t be a single test but a battery of blood tests for markers on

the genes known to be linked to autism.


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Question 39

What part of the brain is affected? Is autism related the Savant

Syndrome and if so how? I am interested in current theories connected

to autism.

Researchers have looked at the brains of autistic persons to see if there are

any noticeable problems in parts of the brain.

While they still don’t understand exactly how changes in the brain structure

affect autism, they have found changes in the limbic system of the brain which

is the part of the brain that affects emotions and emotional behavior.

The other brain changes seem to show up in the cerebellum which controls

movement and it seems that the corpus callosum—the band that connects the

two halves of the brain—isn’t as big as in normal children.

Interestingly, “Rain Man” is an autistic savant who has a complete absence of

his corpus callosum.

There is a strong relationship between autism and the Savant syndrome.

Up to 10% of autistic children will have Savant syndrome whereas only 1% of

the normal population has it.


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Perhaps it is related the thinner corpus callosum seen in some autistic

children but scientists don’t know for sure.

There are many theories on the development of autism—many of which are

coming together to give doctors an idea of how this disease occurs.

Some of these include the following hypotheses:

1. Autism occurs as a result of problems with several genes in the body

that interact with each other.

2. It’s possible that the bad genes mean proteins or enzymes are missing

in the body and that these proteins are necessary for normal brain

function.

3. It’s possible that the problems with the genes cause a sensitivity to

environmental stress or toxins. The toxin sensitivity could contribute to

autistic symptoms.

These theories and others are just pieces of the puzzle of autism.

Gradually, the specific genetic problems and what they do will be discovered

and the possibility of a cure can be made a reality.


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Question 40

I'm a grandparent of a child, who is seven years old, and has Aspergers.

To get to the point I was told only lately that my daughter's partner was

using steroids when she fell pregnant. Could you please tell me if there

is any link between his using and the child's problem?

Autism is believed to have genetic and environmental causes. This means

that a child can inherit the disease from either the mother or the father or

possibly from both parents.

When we say something is genetic, we mean that it is a problem with the

genes.

This problem can come directly from the parents’ genes which already carry

the problem but don’t show it as much or the gene problem can come from

genes that are somehow damaged due to toxic exposure or pure accident.

The bad genes generally come from something a parent is exposed to that

damages the genes they pass on to their child.

This can happen in either a mother or the father; however, nothing is known

specifically about steroid use in the father causing autism.

There are probably many drugs and toxic exposures we don’t know about that

affects the genes in the sperm or the egg.


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The environment inside the womb can also contribute to autistic symptoms.

Infections, such as German measles in pregnancy and other viruses in

pregnancy are known to cause autism in the child who was exposed during

early brain development to the inflammation and infection of the viruses.

Other genetic problems, like fragile X syndrome and tuberous sclerosis, seem

to also go along with the diagnosis of autism in some cases.

Exactly how they are related is not yet known.

Could steroid use in the father cause autism in a child?

In order for this to be the case, the steroids would have to cause a problem

with the genetic portion of the male sperm.

As of this date, no one knows for sure that this situation couldn’t happen but

there is no evidence yet that it does happen either.


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Question 41

Why do some children get diagnosed with autism at an early age and

others not until 10/11 years old? Do the signs not show for some

reason?

The diagnosis of autism, unfortunately, isn’t a matter of a blood test or other

simple test that would make the diagnosis obvious.

There are several factors that could explain why a person would get

diagnosed very young and another not for another 10 years.

Autism isn’t just a single disorder and not everyone will show a severe case of

the condition.

Children with autism labeled as “classic autism” will most likely be diagnosed

fairly soon.

These children have problems with talking and will demonstrate social

behaviors that are bad enough to be noticed fairly early in life.

If another child with autism develops “pervasive developmental disorder”, he

or she will show only milder symptoms or may have only some of the

symptoms of autism.


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He or she may be thought of as different, shy or hyperactive instead of autism

until a parent pushes for a clearer diagnosis

Or until a doctor finally makes the connection between the symptoms and

autism.

The same is true in Asperger’s syndrome.

Often the child has normal speech and language but shows repetitive

behaviors and clumsiness that can be written off as just being clumsy or being

a little bit obsessive about things.

A case of mild Asperger’s syndrome may only be noticed if the child doesn’t

outgrow some of his or her symptoms.

In “childhood disintegrative disorder”, the child often appears normal until the

age of 2-4 years.

At that time, the child loses interest in playing with others and may be thought

of as being shy or “in a phase” before a doctor diagnoses the condition

correctly.

There are a number of conditions that overlap autism and can be confused

with autism.


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Immaturity, obsessive-compulsive disease and ADHD can look much like

autism and there can be a period of time where the wrong diagnosis is made

at first until someone realized that there is something different going on, which

leads to a correct diagnosis of autism.

Other than in childhood disintegrative disorder, the symptoms are probably

always there but they are not seen as being due to autism or are so mild that

it isn’t until the child is older that the correct diagnosis is made.


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Question 42

I have been told that 95% of people with autism have a Morton Toe

(second toe longer than big toe). I can find no reference to this "fact".

Can you shed any light on this?

An extensive review of the literature revealed no association between Morton

Toe and autism.

Children with autism, however, do sometimes show orthopedic problems or

symptoms (problems with their bones).

The most obvious finding is an increased risk of either a large head

(macrocephaly) or a small head (microcephaly) when compared to children

who don’t have autism.

Microcephaly is most commonly associated with Rett Syndrome, which is one

of the various disorders on the autistic spectrum.

Rett Syndrome involves patients who are more likely to be girls and is a

disease that is associated with a known problem with a particular gene in the

cells.

Macrocephaly can be seen with any other of the autism spectrum disorders.


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Rett syndrome patients are also more likely than average to develop several

bony abnormalities, including scoliosis, which occurs in up to 95% of those

affected with the disease.

Tightening of the Achilles’ tendon or heel cord occurs in more than half of the

affected patients.

Another problem Rett syndrome patients suffer from is what’s called instability

of the hip.

This means that the ligaments and bones supporting the hip joint fail and the

hip can become painful or can become dislocated.

On the whole, however, children with autism are, to all appearances, normal-

looking with no specific orthopedic signs that definitely relate to autism.

Where the real abnormalities show up (besides their behavior and disability) is

in the brain scan, which shows unusual findings in the amygdala, which

controls memory and our ability to show fear.

Also in the rest of the limbic syndrome, which controls emotions and feelings,

and in the cerebellum, which controls movement.

It’s possible that a brain scan can some day tell if a person has autism just by

looking at these areas. Research on the issue is still ongoing.


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General Autism

Questions


139


In our final chapter we have a variety of questions and answers that didn’t

quite seem to fit in with any of the other chapters.

But none the else are very useful and interesting pieces of information for

parents of autistic children.

We reveal practical tips and techniques on gluten free and other such diets,

autism symptoms and future planning for parents of autistic children.


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141


Well that’s just about the end of this e-book.

I really hope that it has given you some practical and easy-to-use tips and

techniques for parenting your Asperger’s child.

Remember that you can use this as a resource to scan back to when you

have some challenges in your life – in fact I encourage you to do this.

I wish you, your child and your whole family all of the luck in the world in

taking these ideas and using them to improve your quality of life.

Any comments, questions or suggestions are greatly received by me as I

always want to learn more in this area.

And I am a firm believer that the best way of learning is through sharing.

So any feedback at all please email me at [email protected]

Thanks again for reading

Dave Angel


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Question 43

Can you please give your advice on following a gluten free diet our son

is 4 years old and is non-verbal? We have heard that this will help him

learn to speak?

Studies have shown that the inability to break down certain types of foods can

affect neurological processes in some individuals.

The proteins found in wheat, rye, oats, barley and dairy products (Gluten and

Casein) are not completely broken down in some autistic children.

Most people have the ability to break down gluten and casein proteins into

peptides and further into amino acids.

When our bodies are unable to break down these foods, the problem is

sometimes misdiagnosed as food allergies.

Medical professionals in England and Norway have performed several tests

on children with Autism and discovered that 50% of these children do not

break down gluten/casein proteins completely into amino acids.

Most of these undigested proteins (peptides) are then eliminated in the urine,

but some may enter into the bloodstream.

Unbroken peptides entering into the bloodstream may cause abnormal brain

development and create an opiate-like affect.


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Opiates depress the activity of the nervous system including such reflexes as

breathing rate and heart rate.

They can cause the individual to feel drowsy, warm and content due to the

relaxation. They also block pain sensations.

A urine test by your physician can detect if there are unbroken peptides

present.

Many parents choose to remove gluten and casein from their child’s diet.

Some studies suggest positive changes result from this diet. Others have not

shown any changes.

A positive result may be evident within one week or it may take a full year

before parents notice any changes. Of those reporting changes, the

experience is varied.

Some parents have stated that their child was able to sleep through the night.

Others have reported that their child was now able to interact with other

children and more importantly, with the family.

The most positive feedback voiced from parents is “My child, who never had

speech, is now talking in sentences.”

There still exists controversy on whether these are “recovered” autistic

children.


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For more resources on the gluten free diet, see the following resources:

www.glutenfree.com

www.paleodiet.com


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http://www.glutenfree.com/

http://www.paleodiet.com/


Question 44

I have been told by the doctors that there is a possibility my two and a

half year old son may have autism. I have looked at the symptoms and

the symptoms my son has are; he doesn’t talk he can say about 5

words. When he was younger he had behavioral problems and head

banged a lot. He has calmed down a lot but still head bangs. Sometimes

he wakes up in the night from a sleep having fits lasting up to about an

hour screaming, head banging, throwing himself and biting. The Doctors

have recently told me my son’s head is slightly large for his age. Could

you please give me some information and what you think because I

don’t seem to be getting any help from my doctors?

The diagnosis of autism includes several diagnostic characteristics, including;

1. Delays or abnormal functioning in at least one of the following areas,

with onset prior to age 3 years:

(A) social interaction

(B) language as used in social communication

(C) symbolic or imaginative play

2. Social interaction: lack of eye contact, failure to develop peer

relationship, prefers solitary activities.

3. Communication: delay or total lack of language

4. Symbolic play: repetitive or odd behaviors, fixation on items or

activities


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If your son is not communicating, it is certainly worth further evaluation.

If your current physicians are not providing you with answers, I would find a

new doctor.

The interrupted sleep patterns may be an indication of night terrors. Night

terrors

can be common in younger children.

Night terrors are a common sleep problem among children. By some

estimates, about 15% of younger children have occasional night terrors.

Although most common in children between the ages of 2 and 6 years, they

can occur at almost any age.

Typical night terrors last about 5 to 30 minutes and afterwards, children

usually return to a regular sleep.

If you are able to wake your child up during a night terror, he is likely to

become scared and agitated, mostly because of your own reaction to the

night terror, especially if you were shaking or yelling at him to wake up.

Instead of trying to wake up a child having a night terror, it is usually better to

just make sure he is safe, comfort him if you can, and help him return to sleep

once it is over.

No treatment is usually necessary for routine night terrors.


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Since they are often triggered in children who are overtired, sticking to a good

bedtime routine and making sure your child is getting enough rest can help to

prevent them.

For children who get frequent night terrors, it might help to wake your child up

before the time that he usually has a night terror.

This is thought to interrupt or alter the sleep cycle and prevent night terrors

from occurring.


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Question 45

What consequences will I be facing in the future with my Autistic child?

With the appropriate interventions, your child can live a happy life that can be

productive and fulfilling for both of you.

The effects of autism on any individual can be widespread, with some living

nearly normal lives.

The daily care of an autistic child can often seem overwhelming.

Meeting their physical needs, responding to their emotions, creating an

appropriate environment, and helping them learn is an ongoing challenge.

But adopting a few basic guidelines—such as maintaining a routine and

reinforcing positive behaviors—should make things easier for you and your

child.

All children benefit from a consistent routine; however, a routine is often a

necessity for an autistic child.

Involve all family members in the decision of what the routine should be.

Individual needs, temperaments, schedules, and commitments should be

considered.

The routine allows the autistic child to predict the day's events, which brings

him security.

Establish a set time for meals, bath, play, activities, shopping, school, friends,


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bedtime, etc. and abide by the routine as much as possible.

Be sure that family members, friends, teachers, and neighbors are familiar

with the routine so they can be supportive.

Many experts feel that a consistent environment is the best tool available for

autistic children to learn.

Consistency in the daily routine, discipline, communication, social interactions,

and experiences all contribute to reinforcing their learning environment.

Autistic children have trouble transferring what they learn from one experience

to another.

For example, they may use the proper sign language for drink when they want

a drink at school, but may stand in front of the fridge and scream when they

want a drink at home.

Many parents of autistic children do not discipline because they are

unprepared to handle the negative behavior.

Although there is no magic formula for disciplining any child, many parents

believe that behavior modification is most effective in changing the negative

behavior of a child with autism.

In most cases, if positive behavior is followed with desirable consequences,

the child will repeat the behavior in order to gain the reward.

Investigate the programs in the area and select the one that best meets the

needs of your child.


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Question 46

How can I find good tasty foods for my autistic child that is good for

her? I really have trouble getting her to try new foods. And I really need

to know about foods that will help her not hurt her. Please Help. I can't

seem to find any information on diet for her.

It is likely that your child is responding to the texture of the food and how it

feels in her mouth, or the smell of the food, rather than the flavor of the food.

If you can access an occupational therapist who can evaluate your daughter

for sensory dysfunction, meaning that she may be more sensitive to tastes,

textures, smells, etc., they can help you develop a program that will

desensitize her to the things that she finds offensive.

If you are unable to locate a professional to help you develop a plan, there are

some things you can try at home that may be beneficial:

1. Try using an electric toothbrush, allow her to use it on herself. This will

introduce her mouth to different sensations.

2. Try massaging the inside of her mouth, using a sponge swab dipped in

varying flavors.

3. Eliminate any distractions in the environment during mealtime.

4. Avoid foods that have a strong odor, or extreme flavors.

5. Take your time introducing foods to her, allowing her to try small

amounts of new foods.


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6. Document which foods are successful, and continue to offer things that

are similar.

7. Document which foods are unsuccessful and try to determine if they

have anything in common, are they smooth, are they crunchy, this may

help you to determine exactly what it is about the food that she dislikes.

Additionally you may want to consider trying out a 'gluten free' diet for your

child as she may be exhibiting some of the early signs of food intolerances. A

useful website which gives support for families trying dietary interventions for

autistic spectrum disorders is www.gfcfdiet.com


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http://www.gfcfdiet.com/


Final Thoughts


154


Well that’s just about the end of this ebook.

I really hope that it has given you some practical and easy-to-use tips and

techniques for parenting your Autistic child.

Remember that you can use this as a resource to scan back to when you

have some challenges in your life – in fact I encourage you to do this.

I wish you, your child and your whole family all of the luck in the world in

taking these ideas and using them to improve your quality of life.

Any comments, questions or suggestions are greatly received by me as I

always want to learn more in this area.

And I am a firm believer that the best way of learning is through sharing.

So any feedback at all please email me at [email protected]

Thanks again for reading

Dave Angel


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the parenting autism resource guide by dave angel · the writer of the material present in “the...

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