AUTISM BEYOND PEDIATRICS: WHY BIOETHICISTS OUGHT TO RETHINKCONSENT IN LIGHT OF CHRONICITY AND GENETIC IDENTITYbioe_1952 236..241

ALEXANDRA PERRY

Keywordsautism,consent,chronicity,pediatrics,identity

ABSTRACTAutism is a chronic neurodevelopmental disorder that presents uniquechallenges to bioethicists. In particular, bioethicists ought to reconsiderpediatric consent in light of disparity between beliefs that are held about thedisorder by parents and adults with autism. The neurodiverse communityought to be given some consideration in this debate, and, as such, theremay be a role for autistic narratives in clarifying this problem.

I. INTRODUCTION

As debates over autism make their way into scholarlyliterature, it seems clear that the disorder occupies a con-fluence of various academic disciplines: law; psychology;education; philosophy of mind and language; and neuro-science, to name a few. These debates, however, have notvery successfully filtered through to ethics. There is someliterature on autism as a challenge to moral theory, and afew articles on applied ethical problems related to autism,but, overall, autism is scarcely talked about in ethics, andparticularly bioethics, where it certainly seems a relevantchallenge.1 Autism raises many rich questions for bioet-hics2 such as the criteria for autonomy and agency in lightof the challenges that it poses, the moral implications ofa spectrum approach to diagnosis, and, generally, theethics of research on autistic subjects.

In a review of The Ethics of Autism (Barnbaum, 2008),3

Moffic (2009)4 addresses the question of whether a curefor autism should be used, if one were to become avail-

able. Moffic claims that he has ‘never encountered a ques-tion quite like this one,’ (p. 853) particularly becauseautism is so intimately related to the identity of autisticagents, which, as he explains, can be both a benefit and adrawback. Moffic argues that one concern for ethicistsand clinicians relates to broader questions in the treat-ment of psychiatric disorders such as ‘. . . the ethical con-sideration of drawbacks of treatment if it ultimatelyreduces something valued’ (p. 854) such as creativity orfocus. Ultimately, Moffic agrees with Barnbaum’s con-clusion, stating that ‘very early intervention should beprovided’ and that:

Should a ‘cure’ become available, adults with autism,unless they have major behavioral problems, may farebest with their usual treatment, both because theyoften seem satisfied and because drastic change wouldbe an unimaginable challenge to their identity (Moffic,2009: 853).

Perhaps the most pressing dilemma for bioethicists iswhat consent ought to look like in autism research andtreatment, given the lack of consensus over the nature ofautism and autistic experience. Consent in autism is par-ticularly complicated for a few reasons. For one, autismis a neurodevelopment disorder that often presents inimpairments in social cognition and language usage(Woodbury-Smith and Volkmar, 2009).5 In other words,at its most basic level, autism presents challenges to

1 Some ethical questions related to autism, such as autism as a challengeto traditional moral theory, the value of an autistic life, whether autisticagents are autonomous, and the ethics of research on autistic individu-als, were raised by Barnbaum (2008). Still, it is rare to see scholarship onautism in relation to problems that fall under applied bioethics.2 D. Chen, F. Miller & D. Rosenstein. Ethical Aspects of Research intothe Etiology of Autism. Mental Retard Dev Disabil Res Rev 2003; 9:48–53.3 D. Barnbaum, D. 2008. The Ethics of Autism: Among Them, but Notof Them. Indianapolis, IN: Indiana University Press.4 H.S. Moffic. Book Review of The Ethics of Autism: Among Them,but Not of Them. Psychiatr Serv 2009; 60: 853–854.

5 M. Woodbury-Smith & F.Volkmar. Asperger Syndrome. Eur ChildAdolesc Psychiatry 2009; 18: 2–11.

Address for correspondence: Ms Alexandra Perry, Bergen Community College – Philosophy, 403 Meadowlands 1282 Wall Street West, Lyndhurst,New Jersey 07071, USA. E-mail: APerry@bergen.edu or Alexandraperry1@yahoo.comConflict of interest statement: No conflicts declared

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common conceptions of informed consent because autis-tic individuals may process the information that they aregiven in a very different way than neurotypical individu-als might, and, in some cases, they may lack the linguisticcapacity to articulate questions or concerns. Furthercomplicating matters is the fact that autism is commonlyaddressed as an issue for pediatrics, despite the fact thatit is a chronic disorder. Parents are often asked to giveproxy consent for research and treatment of their autisticchildren, and, frequently, little regard is given to the chro-nicity of the condition or the child’s future identity as anautistic adult. As Donovan and Zucker (2010) argue:

The discussion of autism to date has skewed, under-standably, toward its impact on childhood. But thestark fact is that an epidemic among children todaymeans an epidemic among adults tomorrow. Thestatistics are dramatic: within a decade or so, morethan 500,000 children diagnosed with autism will enteradulthood. Some of them will have the less severe vari-ants . . . and may be able to live more independentand fulfilling lives. But even that subgroup will requiresome support, and the needs of those with lower-functioning varieties of autism will be profound andconstant (Donovan and Zucker, 2010: 7).6

This oversight on the part of scholars and clinicians tofocus due attention on the chronic nature of the autismepidemic is particularly problematic in light of researchby Clarke and Amerom (2007, 2008),7 which shows thatunderstandings of autism and conceptions about thetreatment of it vary greatly between parents of autisticchildren and adults with autism. If these two perspectivesare irreconcilable, bioethicists, it seems, are presentedwith a great challenge in talking about consent in light ofthe chronicity of autism. Should the views of the adultautistic community be dismissed in favor of more tradi-tional views about the role of parents in consenting forminors? The divergent views about autism held by adultswith the disorder and neurotypical adults raising childrenon the spectrum makes autism a special case with regardto consenting for minors. These views ought to be givenmore consideration in pediatric research and treatment.

The narratives of adults with high-functioning autismare becoming more familiar to the public,8 and may be aplace to begin this discussion, because it is easy to see how

they can inform the process of pediatric consent in highfunctioning autism. These narratives may also prove tobe useful in informing pediatric consent in cases thatinvolve children on other parts of the autism spectrum.Perhaps through the use of adaptive technologies itmay even be possible to access the narratives of adults ondifferent levels of the spectrum, such as those who arenon-verbal or otherwise less able to share their experi-ences, because ideally, individuals on all levels of thespectrum would be able to offer such narratives to informthe pediatric consent process.9 Whatever the startingplace, in light of the chronicity of autism, the narrativesof adults on the spectrum ought to be consulted in theconsideration of pediatric treatment.

This article is divided into three sections. First I look atthe way that bioethics might make use of narratives indiscussions over informed consent and research ethicsin autism. In particular, I discuss the problem of consentfor autism research and treatment in pediatrics. Then, Iintroduce the neurodiversity movement and discuss thechallenges that it and other genetic identity movementsand communities present to traditional notions of ethicsand legality in the research and treatment of chronicdisorders. Finally I explore the seeming conflict betweenparental and disability rights which places childrensquarely in the middle and calls for bioethical appraisal.By making a case for the inclusion of the narratives ofadults on the autism spectrum, I explore the question:how, exactly, can bioethicists clarify the public image ofautism and consider autistic points of view when discuss-ing pediatric autism?

2. USING NARRATIVE TO INFORMDISCUSSIONS OF AUTISM IN BIOETHICS

Hacking (2009) points out that there is a role for stories inclarifying this public image of autism.10 Though Hackingaims to focus his discussion on the role of fiction, he alsoacknowledges a role for biography and autobiographyabout autism in increasing understanding of the autisticexperience. This would be beneficial, he claims, in help-ing neurotypical agents to understand autism. Hackingargues:

Many people with autism have a great deal of difficultyin understanding what other people are doing, feeling,

6 J. Donovan & C. Zucker. 2010, Autism’s First Child. The AtlanticOctober. Available at: http://www.theatlantic.com/magazine/archive/2010/10/autism-8217-s-first-child/8227/ [Accessed 30 Oct 2010].7 J. Clarke & G. Amerom. Surplus Suffering: Differences Between theOrganizational Understandings of Aspergers Syndrome, and ThoseWho Claim The Disorder. Disabil Soc 2007; 22(7): 761–776; J. Clarke &G. Amerom, G. Aspergers Syndrome: Differences Between ParentsUnderstanding and Those Diagnosed. Soc Work Health Care 2008;46(3): 85–106.8 Such as John Elder Robison’s 2007 memoir Look Me in the Eye: MyLife with Aspergers. New York, NY: Crown Publishers.

9 When President Barack Obama appointed Ari Ne’eman to theNational Council on Disability (NCD), objections were raised overNe’eman’s ability to represent the needs of the autistic community andthose on the lower parts of the spectrum, as an individual with Asperg-ers Syndrome. Similar objections might be raised over the ability ofhigher-functioning adults to inform pediatric consent.10 I. Hacking. How we have Been Learning to Talk About Autism:A Role for Stories. Metaphilosophy 2009; 40(3–4): 500–517.

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or thinking. The intentions of others are opaque. Thesituation is symmetric. Neurotypicals like me have alot of problems understanding autistic individuals,even if they become quite articulate. The more severelyaffected among them, the ones who talk in strangeways or not at all, sometimes seem simply ‘other’.11

McGeer (2009)12 agrees with Hacking’s proposal thatautistic narratives can serve to inform the non-autisticpublic, and argues that these narratives might actuallyserve to transform the autistic experience for the better.Rather than characterizing people with autism as being‘socially awkward, isolated, or uncommunicative,’ sheargues:

As autistic individuals talk and write more aboutthemselves, and as these reflections become morewidely disseminated . . . our interactions with autisticindividuals are bound to change in countless ways. . . as more room is made in social space for peoplewith a now increasingly familiar suite of atypicalbehaviors and needs. The ‘odd’ and ‘strange’ and‘better off avoided’ will become, at least in somerespects, more ‘normal,’ more accepted,’ more ‘workedwith’ than ‘worked against’ (McGeer, 2009: 528)

Hacking and McGeer reinforce the idea that autism ischronic, and not something that afflicts pediatric patientsalone. If, as they argue, neurotypical or non-autisticindividuals have so much to learn from the narrativesof autistic adults, then bioethicists ought to be raisingimportant questions about how the treatment of autismin pediatrics might affect the individual’s experience overthe course of a whole lifetime. One such question wouldbe about what informed consent ought to look like inlight of this chronicity.

While children are often asked to assent to a particulartreatment or medical intervention, the burden of consenttypically falls to their parents.13 Often, the assumption isthat the parent knows the child best, and is looking outfor his or her future autonomy. In the case of autism,however, this is complicated. If parents of autistic chil-dren and adults who are diagnosed with autism are atodds about the classification of the disorder and the mostbeneficial means of treatment, how can parents still besaid to have the most informed opinion of their child’sfuture autonomy? This question is not insignificant, asautism is no stranger to controversy over its potentialcauses and treatments.

Thousands of autistic children have been subjected toinvasive tests such as spinal taps, colonoscopies, and

brain scans. They have received chelation therapy to ridtheir bodies of heavy-metal toxins, been put on strictdiets, and subjected to shock therapies and medicationregimens that rival those used to treat cancer. Thesetrials, treatments, and studies have rarely been conductedin secret labs, but in hospitals and pediatricians offices bywell-respected physicians and scientists.14 One commonlyknown controversy over autism was prompted by thefindings of Andrew Wakefield’s study, published in TheLancet in 1998, which suggested a link between vac-cines and autism (Wakefield, 1998).15 Though Wake-field’s study has been retracted, and his medical licensestripped16 many people still cite vaccines as the cause ofautism. Meanwhile the narratives of adults with autismcommonly convey that not only are they skeptical of suchtreatments, but, also, that they don’t view themselves asdisordered in the first place.17

What role are these narratives to play in decisionsabout consent? Parents are, understandably, reluctant totake a back seat when it comes to the medical treatmentof their children. While parents are likely to do what theythink is in their child’s best interest, it’s unclear that thisis sufficient reason to allow them full discretion in theirability to consent. As Hacking (2009) and McGeer (2009)pointed out, it’s doubtful that neurotypical parents arecapable of fully understanding the autistic experience,and, as such, if narratives are available, parents and cli-nicians ought to take heed. Adults with autism raise aninteresting new challenge for bioethics, that of ethics inlight of genetic identity.

3. NEURODIVERSITY: ETHICS IN LIGHTOF CHRONICITY AND GENETIC IDENTITY

Ouellette (2009)18 discusses the limits of parental consent,citing ‘Asian eye surgery’ as a case where parents shouldnot be able to elect for an intervention on behalf of theirchildren. She cites various social reasons as being usedby parents to justify adding a fold to the eyes of Asian

11 Ibid: 504.12 V. McGeer. The Thought and Talk of Individuals with Autism:Reflections on Ian Hacking. Metaphilosophy 2009; 40(3–4): 518–530.13 J. Hattab & Y. Kohn. Informed Consent in Child Psychiatry – ATheoretical Review. Journal of Ethics in Mental Health 2007; 2(2): 1–6.

14 Some of these tests were conducted in secret labs, however. Offit(2008) points out that Mark and David Geier created a laboratory attheir home to conduct studies, but that these studies were approved byan IRB that they served on with family members and colleagues;P. Offit. 2008. Autism’s False Prophets: Bad Science, Risky Medicine,and the Search for a Cure. New York, NY: Columbia University Press15 A.J. Wakefield et al. (1998). Ileal-Lymphoid-Nodular Hyperplasia,Non-Specific Colitis, and Pervasive Developmental Disorder in Chil-dren. Lancet 351: 637–641.16 J. Burns. 2010. British Medical Council Bars Doctor Who LinkedVaccine with Autism. The New York Times 24 May.17 J. Clarke & G. Amerom. Aspergers Syndrome: Differences BetweenParents Understanding and Those Diagnosed. Soc Work Health Care2008; 46(3): 85–106.18 A. Ouellette. Eyes Wide Open: Surgery to Westernize the Eyes of anAsian Child. Hastings Cent Rep 2009; 39(1): 15–17.

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children in order to make them look more like theirAmerican peers. Ouellette explains that ‘more than230,000 such procedures were performed in 2005.’ Thissort of intervention is unethical, she claims, because it isa permanent change to the child’s identity. Likewise, indiscussions over the ethics of transracial adoption (Smith,1996),19 it is common to see discussion of adoptiveparents’ obligations to allow their adoptive children to befamiliar with the culture and traditions of their biologicalfamilies.20 The Multi-Ethnic Placement Act21 (1994) ‘pro-hibits the delay or denial of any adoption or placementin foster care due to the race, color, or national origin ofthe child or of the foster or adoptive parents,’ however,it also ‘requires States to provide for diligent recruitmentof potential foster and adoptive families who reflect theethnic and racial diversity of children for whom homesare needed.’ While children with autism might not neces-sarily have a parent who is also on the spectrum, thenarratives of these individuals can and should be solic-ited. Autism is chronic, and therefore any pediatric inter-ventions ought to consider the future identity of theautistic individual.

Communities are beginning to form around geneticidentity, and while it is exciting when new interventionsbecome live options for clinicians, these options alsocommonly add to bioethical dilemmas. Some deafparents want to choose to have deaf children (Shaw,2008),22 and parents can now select or screen for particu-lar genes through assisted reproductive techniques, bothcases raising many questions and spurring many debatesamong bioethicists. Parents have always been afforded agreat deal of freedom over the decisions that they makefor their children. They can decide whether to give themany sort of religions instruction, what role nutritionought to play in their lives, and what activities they will bea part of. These freedoms clearly have the potential toaffect a child’s physical and mental well-being and iden-tity. New biological options now bring about potentialfor more direct intervention into the identities of children.These new possibilities result in a new sort of consider-ation that ought to be given to communities that formaround particular genetic traits, one that is similar to theconsideration given in cases of culturally based interven-tions. Proponents of the neurodiversity movement arecalling for a recognition of their rights in this regard.

If talking about this sort of genetic identity raises dif-ficult questions for ethicists, this is particularly true incases of behavioral genetics such as autism. Behavioralgenetics are complicated. As Parens (2004)23 argues, typi-cally there is consensus among clinicians about ‘the rel-evant scientific facts of the matter’, so bioethicists canstudy these and begin to think about the moral implica-tions of them. In behavioral genetics, however, cliniciansand bioethicists have to ‘try to reach a common under-standing of what the science has shown and promises toshow in the future.’ How much freedom should parentsbe afforded when their decisions have the potential toinfluence the future identity of their children? If thisfreedom is extended past education and environmentaldecisions to medical decisions, should it also be extendedto decisions over mental health? And what role shouldthe parents’ own experiences, or lack of experience, playin this appraisal?

Addressing these questions about autism may proveto be even further complicated, as it is not defined by theDSM as one particular disorder, but, rather, a spectrumof neurological differences characterized by the presenceof common behaviors and interests, not a common causeor cure. Autism diagnosis relies primarily on phenotypiccategorizations (Micali, 2004),24 that is, the identificationand grouping of various behaviors, traits, and abilitiesthat are held in common by the people being diagnosed.A similar mapping of ‘constellations of symptoms’(Carroll, 2009)25 is done in order to diagnose a rangeof mood disorders and other neurological differences(Towbin, 2005).26

In fact, there is much controversy over the classifica-tion of Aspergers Syndrome, perhaps the most highlyfunctioning autism diagnosis, in the DSM. In the nextDSM revision, due out in 2014, it is likely that Aspergersand Autism will be merged into one diagnosis, furtherblurring boundaries. Some are pleased with this move-ment, arguing that using a spectrum approach servesto remove the stigma from the autism diagnosis, low-functioning autistics receiving the same diagnosis as theirhigh-functioning or Aspergian counterparts (Grinker,2010.)27 Most in the Aspergers community,28 however,

19 J.F. Smith. Analyzing Ethical Conflict in the Transracial AdoptionDebate: Three Conflicts Regarding Community. Hypatia 1996; 11(2):1–33.20 Vidal de Haymes and Simon (2003) claim that cultural competenceand racial sensitivity is key to positive outcomes in transracial adop-tions. M. Vidal de Haymes and S. Simon. Transracial Adoption: Fami-lies Identify Issues and Needed Support Service. Child Welfare 2003;83(2): 251–272.21 P.L. 103–382 [42 USC 622].22 D. Shaw. Deaf by Design: Disability and Impartiality. Bioethics2008; 22(8): 407–413.

23 E. Parens. Genetic Differences and Human Identities. Hastings CentRep 2004; 34(1): S1–S36.24 N. Micali, S. Chakrabarti & S. Fombonne. The Broad AutismPhenotype: Findings from an Epidemiological Survey. Autism 2004;8(1): 21–37.25 L. Carroll & M. Owen. Genetic Overlap Between Autism, Schizo-phrenia, and Bipolar Disorder. Genome Medicine 2009; 1(10): 102–102.26 K. Towbin. Autism Spectrum Traits in Children with Mood andAnxiety Disorders. J Child Adolesc Psychopharmacol 2005; 15(3).27 R. Grinker. (2010) Disorder out of Chaos. The New York Times. 9February.28 Members of this community often refer to themselves as ‘Aspies’according to J. Robison. 2007. Look Me in the Eye: My Life withAspergers. New York, NY: Crown Publishers.

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reject this recategorization, citing that it is likely to under-mine their efforts to construct public opinion of Asper-gers as a difference, rather than a disability. Autismexperts often don’t agree about the facts of the matter,and, as such, it’s easy to see why parents, clinicians, andindividuals with autism might come to different conclu-sions about the disorder. These complexities involved inthe diagnosis of autism underscore the case that narra-tives of adults on the spectrum ought to be utilized toinform decisions about the treatment of pediatric autism.

Many individuals with autism and other disabilityrights activists ‘see their movement as strongly analogousto the movements for racial civil rights, women’s rights,and other similar movements (gay rights, immigrantrights),’ (Amundson and Tresky, 2007).29 Parents of chil-dren with autism also claim a right to make decisionsabout their children’s medical care. There are strong par-allels between this case and transracial adoption becausethe autistic child is, in a sense a member of two commu-nities, their family and the neurodiverse community. Theobvious disanalogy here is that parents who adopt tran-sracially do so consciously, while parents of autistic chil-dren do not decide to have neurodivergent children.Further, because autism is chronic, the child cannotchoose to be neurotypical in a way that a transraciallyadopted child might opt to try to assimilate to the cultureof her adoptive parents.

4. WHOSE RIGHTS?

While the problem of consent in autism is similar in kindto other dilemmas, the degree to which interventionsmight, theoretically, affect the identity of the autistic indi-vidual may be much greater than in cases presented bytransracial adoption, the deaf community, and so on.Such cases are clearly complicated by considerations ofidentity and chronicity. The decision over whether toprovide interventions for a deaf child, for example, is onethat weighs heavily on his or her identity. Whether or notan individual has the ability to hear is a difference thatwill affect the way in which he or she experiences theworld. Autism presents a similar dilemma, though itdiffers in one regard. A theoretical cure for autism has thepotential not only to change the way autistic individualsexperience the world, but also the way that they under-stand it, or their very patterns of thought. While hearingparents aren’t likely able to imagine what it would be liketo be hearing impaired, they can probably make someinferences by drawing on their own experiences with caseswhen it was critical to hear. In contrast, neurotypicalindividuals, even by making use of the most remarkable

thought experiments, cannot have an autistic experience,which would require them to take on thought patternsthat they are incapable of assuming.

A better analogy might be the case of assigning agender to intersexed children. It is highly unlikely that anindividual who is not intersexed might be able to makesense of the experience of being intersexed. A similarreliance on the narratives of adults is seen in this case(Dreger, 1998),30 which raises the question of why this isso rare in autism. Parents of intersexed children are oftenoffered ethical consultations that include case studies ofchildren who have undergone gender assignment inter-ventions, as well as case studies of children who have not.Often, however, the ethics of assigning a gender to anintersex child is quite muddy. Some claim that thisresponsibility is outside the scope of parental responsi-bility and should be outside the scope of parental rightas well.31 Still, legally, these decisions typically fall toparents because they:

‘Possess what a child lacks in maturity, experience, andcapacity for judgment required for making life’s diffi-cult decisions . . . and that natural bonds of affectionlead parents to act in the best interests of their children’(1979).32

Experience may be the key word, in this case. Canparents still be said to have ‘experience’ when thatexperience is so very different from what they expect theexperience of their child to be like? Much of this mayhinge on whether autism is perceived to be a disorder andone that is curable, at least in theory, or, on the otherhand, whether it is perceived to be a way of being. Thehesitance to consult autistic adults when consideringpediatric interventions may be due, at least in part, to thecommon perception that autism is a disorder and, assuch, ought to be cured.

As Bumiller (2008) notes, the neurodiversity movementis still in its infancy, but advocates of it ‘assert that anyerosion of an autistic person’s right to be treated as fullyhuman strikes against the core conditions of freedom in apluralistic society.’33 But is this conception of rights com-patible with deference to parental authority? Kohrman(1995)34 argues, ‘Providers of care and services to childrenhave to carefully justify the invasion of privacy and psy-chologic disruption that come with taking the legal steps

29 R. Amundson & S. Tresky. Bioethical Challenges to DisabilityRights. J Med Philos 2007; 32: 541–561.

30 A. Dreger. Ambiguous Sex – or Ambiguous Medicine? Ethical Issuesin the Treatment of Intersexuality. Hastings Cent Rep 1998; 28(3):24–35.31 B. Cardozo. From the Hospital to the Courtroom: A StatutoryProposal for Recognizing and Protecting the Legal Rights of IntersexChildren. Journal of Law & Gender 2005: 155.32 Parham v. J.R., 442 U.S. 584, 602 (1979).33 K. Bumiller. Quirky Citizens: Autism, Gender, and ReimaginingDisability. Signs 2008; 33(4): 967–986.34 A. Kohrman et al. Informed Consent, Parental Permission, andAssent in Pediatric Research. Pediatrics 1995; 95(2): 314–317.

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to override parental prerogatives.’ But what about caseswhere these prerogatives are at odds with those who arepresumably representative of the child’s future?

To complicate things further, parents may feel thatthey have a strong claim to determine the course of theirautistic child’s treatment because it is common thatparents become the caretakers of autistic adult children ifthey are not able to care for themselves. In the case ofT.H. vs. the Div. Of Developmental Disabilities (2007),35

an adult with Aspergers syndrome was denied servicesthrough the New Jersey Division of Developmental Dis-abilities after his parents, who formerly served as hiscaretakers, passed away. T.H. had no social connections,was not able to secure or keep employment, cook, or carefor his own personal hygiene, and was not responsible forhis own health, yet did not qualify for services because hewas of ‘average to above average intelligence.’ Parents,wary of this future for their children and themselves,may very well feel that any interference with their abilityto make decisions for their children is an injustice. Areparents and the neurodiverse necessarily at an impasseover what interventions are appropriate for children withautism, and who ought to be making decisions over theseinterventions?

Perhaps, but it seems like the impasse might be bridgedby considering the types of interventions in question. Theconsideration of neurodiverse narratives could serve asonly one facet of discussions of consent, for example. Theconcern for the autonomy of the autistic child ought to beaddressed primarily, and, because her present and futureidentity is and will be influenced both by being a memberof a particular family, and by her status as a neurodiverseagent, it is rational for clinicians to weigh both of theseperspectives.

5. CONCLUSION

It is important for clinicians and parents to keep in mindthe chronic nature of autism when considering potentialpediatric interventions. Autism clearly presents a puz-zling case for consent. As Ladd (2005) notes:36

Medical treatment for children requires parentalinformed consent. Informed consent requires goodinformation, but there are many unknowns about thetreatment of autism. Without good outcome data,however, how can parents be said to be informed andgive valid consent . . . where options do exist, choicesamong them may be a stab in the dark . . . there are noestablished standards of practice.’ (Ladd, 2005: 88)

There are certainly many unknowns involved in thetreatment of autism, and while parental prerogativeclearly cannot be ignored, reflection on autistic narrativesmay serve to aide parents and clinicians in making diffi-cult decisions about research and treatment.

Acknowledgments

Jane Greenlaw, Alicia Ouellette, and others provided many helpfulcomments on earlier drafts of this paper. In particular, though, I wantto thank Chris Herrera for his significant feedback on my writing andhis willingness to discuss and think these ideas through with me.

Alexandra Perry is a lecturer in Philosophy at Bergen CommunityCollege, and the managing editor of Theoretical & Applied Ethics. Herresearch interests include the philosophy of history, bioethics andmental health ethics. She is currently working on a book on bioethicsand autism that focuses on applied ethical issues surrounding neuro-logical divergence and conceptions of mental health and disorder.

35 T.H. v. the Div. of Developmental Disabilities, 916 A.2d 1025 (N.J.2007).

36 R.E. Ladd. Rights of the Autistic Child. The International Journal ofChildren’s Rights 2005; 13: 87–98.

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