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Opinion / Q&A

Questions for Ari Ne’eman: Partnering with participants

by  /  16 June 2015
The Expert:
Expert

Ari Ne'eman

President and co-founder, Autistic Self Advocacy Network

Working together: Advocates are pushing for people on the spectrum to collaborate with scientists on autism research. retrorocket/Shutterstock.com.

Autism advocates are pushing for more ‘patient-centered research:’ projects that involve people with autism in decisions about studies of the disorder. The goal is to boost the research’s real-world impact by getting input from those most affected by it, a notion so practical that even funding agencies are getting on board.

Ari Ne’eman, an autism advocate who has the disorder, is on the frontlines of this effort. In 2006, he founded the Autistic Self Advocacy Network (ASAN), an organization that champions equal rights for people on the spectrum. (Editor’s note: We typically refer to people with autism, but Ne’eman’s preferred term is ‘autistic.’) The ASAN slogan, ‘Nothing about us without us,’ sums up Ne’eman’s drive to be a part of the scientific process, not simply a ‘subject’ in a study.

We asked Ne’eman why autism researchers should partner with people on the spectrum, and what he hopes will happen when they do.

SFARI.org: What does it mean for people with autism to be partners in research?

Ari Ne’eman: We want to involve the people who are the target of research from the beginning, when we’re conceptualizing our research questions and designing a study, through data collection, analysis and publication. At every step, a cross-section of autistic self-advocates should have the opportunity to review and provide input. The power relationship between researchers and these self-advocates should be equalized to the greatest degree possible.

This approach comes from work in the African-American and Hispanic communities. If you’re studying the challenges African-Americans and Hispanics face, you should involve them in every step of the study. The same holds true for autistic people.

S: What are some examples of how ASAN partners with autism researchers?

AN: For a number of years, we’ve participated in the Academic Autistic Spectrum Partnership in Research and Education. This is a research collaboration between self-advocacy leaders and researchers at Portland State University, Syracuse University and a few other institutions. The collaboration has created autismandhealth.org, a website that provides health and lifestyle information for autistic adults, and tips for doctors on caring for them. We’ve also produced research on health disparities faced by autistic adults.

In collaboration with the nonprofit Human Services Research Institute based in Cambridge, Massachusetts, we are addressing ethical concerns that autistic adults have with autism registries. These registries, which are required in certain states, collect data on autistic adults’ diagnoses, so confidentiality, informed consent and civil liberties are major concerns.

S: How do these partnerships advance autism research?

AN: I’m talking to you from Gallaudet University in Washington, D.C., a place where deaf researchers study issues in deafness. The quality of that research makes it considerably more likely to lead to outcomes that have a concrete impact on the lives of deaf people. The issues around the community of autistic adults are the same. We want to build a pipeline of opportunity for these adults to enter the research profession and to be meaningfully involved, improving the quality, validity and relevance of autism research.

S: In which areas of research would input from people with autism be particularly helpful?

AN: We see little emphasis among researchers on improving the quality of services and addressing the needs of autistic adults. There’s a real gap there, and I think that’s an area where the involvement of autistic people in a meaningful partnership role is indispensable.

Another area is evaluating the efficacy of interventions. We need autistic people’s input to help researchers develop appropriate outcome measures. For instance, researchers should measure success as we do for typically developing children, in terms of academic, social-emotional and cognitive outcomes, rather than focusing on the reduction of autistic traits. Collaborative work is more likely to focus on, “Is this improving somebody’s independent living skills, somebody’s likelihood of being included in the general education classroom, their likelihood of friendships?”

S: Are there any projects underway that you’re excited about?

AN: At the end of our summer leadership academy this week [at Gallaudet University], all of our participants are going to be meeting with their congressional representatives. They’re going to be arguing that federally funded autism researchers need to actively recruit autistic trainees and encourage — in fact, require — their participation.

The federal government is the country’s largest funder of research. We need them to step in. We need our involvement to be formalized so that we’re not just pulling people in at the tail end of a process or tacking on their opinion after the conceptual framework has been established or data collection is underway.

S: Do you see any hopeful signs?

AN: I think so. Last year, several members of Congress wrote to the director of the National Institutes of Health and urged the inclusion of autistic people in the research process. I think it speaks to the growing change in conversation.

We have an opportunity to re-envision the quality of our autism conversation. It’s a chance for us to build a more inclusive vision, one that acknowledges that autistic children will grow into autistic adults. If we do our jobs right, that doesn’t have to be a bad thing.


  • Harold L Doherty

    On what experiential or educational basis does Ari Ne’eman speak for those with severe autism disorders? For the 50% of those with autism (WHO, 2012) who suffer from intellectual disability? For the estimated 30% who suffer from epileptic seizures? … The answer is that he can not and shame on SFARI for presenting him in this capacity. My son suffers from this severe autism trifecta and Mr Ari Ne’eman has no basis to speak on his behalf or on behalf of those who share his condition. SFARI is harming those on the severe end of the autism spectrum of disorders by this misrepresentation.

    • Eli Sage

      Ari Ne’eman wants autistic people to speak, communicate, and vote for themselves. YOU don’t share your son’s condition, either. Why should you speak for him? We should speak for ourselves and for our group and have the right to direct the research about us. We don’t need or want neurotypical people to speak in our place.

    • Catriona

      My son is one of those 50% who happens to have intellectual disability and I am so grateful to Ari and the Autistic Self-Advocacy Movement for speaking up about research, rights, ethics, etc.

    • Kis Brink

      Notions that there is some sort of binary scale where some are severe and some lucked ou and can get and education and represent autistics do far more harm. It’s not as simple as that.

      For one thing if we accept your premise that have an intellectual disability rather than some of those having a problem making their intellect clear (I was considered mentally retarded (I am old so they used that term) when I was young.

      I had many very classical behavours which being a girl given diagnostic rates then you probably needed. Even know as I regress under stress I get to hear the same kind of speculation about my intelligence as I did as a child.

      Whatever a person’s abilities are to be on the autistic spectrum there is a core set of disabilities. Getting people to understand things that impact those by your terms who are severe because we have the ability to communicate does change lives for the better in families willing to listen.

      Do you know for absolute sure your son is not smarter than you think?

      I mentored many kids with autism over the years. Some could speak and attend regular classes without assistance, some couldn’t, some rarely did but when they did it was worth hearing and so on. One thing I noticed is the connection that we could form was not impacted by perceived differences in our place on the spectrum.

      Some of my favourite days were went with a girl who now as a young woman still needs a lot of care but is well integrated into her community. I wish I had had more time to spend as a few times when we were together she would casually comment on something I had never gotten anyone else to understand . (Riding a roller coaster that clearly states it goes upside down 3 times she remarked “People scream. People funny” I though yeah although being older I did understand that this enhances pleasure. In case I had missed her point when after 18 trips in a row as we finally got off to her mother’s indication it was time to eat. She pointed to the sign. Repeated what she had said and I said honestly, “Yep, I always wondered about that too. It says what to expect.” She beamed. Comrades in wondering how odd people in general are.

      If you need to be some opposite side a young boy I mentor now. He is bright in many ways and yet in other ways he would get marked down quite a bit. His logic and the logic of his parents don’t mesh so finding me (and i was he who worked out he and I were the same as I did not know much about the 3 kids I found myself one Holy Day morning. )

      I would submit that in many ways this child has had it harder than both my late for my intelligence to be something people were sure of self and my young friend of amusement park fun.

      Because he wasn’t nice and clear, no clear signal to tell his parents he needed help, wouldn’t understand some ways they thought or talked , would run around at school having gone in his pants as he didn’t care. As his classmates aged they cared of couurse.

      I think if we could make both kids the same age we could go off to the amusement park together and confuse a lot of people because on the bits of fucntioning that autistic people rarely get credited as having she was despite her syntax making advanced statements about human behaviour. He does not do that.

      The point really is is the sooner you learn that adult autistics who spend a great deal of time trying to make sure the next generation has it easier are not the enemy. Nor are we a danger. The misrepresentation is in describing things as static and binary.

      I passed speech eventually does that make me verbal? Not really sadly. It’s actually more frustrating to have the expectation that words will come and have them not than when you just never did. Until you do no one expects it of you.

      Ari has a stronger right to speak for those who share his condition than you do to object to his advocacy.

      If you look at Ari and see a young man in a suit making points you won’t see the many things that overlap your child’s issues.

      If I was having a day when words came easily you might say the same about me. Yet if you took the chance some helpful insight into your son’s life could be gained. I have never met an autistic child where that meeting was considered not useful by the parents no mater where they are at.

      If you read parent blogs you may see a trend to try to get an adult with autism involved and because the kind of connections I have been part of happen over and over and over… you can keep to you position that Ari and myself and others who are grown are nothing lke your child or the more hopeful position that adults with autism will notice things you might not. I say that no to doubt your parenting but for example as I suck at writing in my blog I sometimes float around reading parent blogs. Parents who are devoted. Who spend tme and energy, read every book.

      I came across one with the usual parental despair. Her kid would hardly eat anything. I asked as the foods he ate had more than one texture as she was pondering sensory issues with the food if she had considered issues with what he eats from or with. She did no doubt my ability to have insight. Experimented with finger food and whoosh he was eating so many more kinds of food. Of course working out what was working before would have to come but for then the worries over a balanced diet were gone.

      She could have said you are not like my child. After 3 years of stress I am much closer to my 5 year old me than my 47 year old one but because I loathe picnic season with paper plates and so on, and oh having to spend 15 dollars if I forget my coffee mug because paper and cardboard no…

      She didn’t and there was improvement. Without the common areas of disability you cannot be diagnosed as autistic remember. Perhaps if you tthought maybe your kid is smarter than you think, seizures when controlled (I did respite care for 24 years I know the nightmare uncontrolled seizures are) are something many people have.

      Why be mad at someone trying to educate people? Plus since barring an early death people spend the bulk of their lives as adults ASAN is very important.

    • PJ

      It’s important to remember that the term spectrum, in relation to autism, is a blanket term used for the convenience of therapists, etc, in lieu of any real accurate and definitive terminology. Autistics are speaking up for themselves and must be allowed to speak in order for accurate diagnostic modalities to be created. Just as importantly, this is not a competitive sport and mild, severe, high, low, and other combative terms used to describe autism are grossly inaccurate and damaging and create confusion and division instead of coherence and clarity. Why in the world would you attack someone in a place to help autistics instead of supporting them. Baffling.

  • Anonymous

    Ari Ne’eman knows nothing about research. he is opposed to curing autism. I am autistic and I long for a cure. According to Ne’eman’s and the Simons foundation’s logic, only the most affected should be involved in this autism research. This would only mean people with IQs of less than 30 who are in diapers and head bang and need chronic care. What sense does this make?

    • Kis Brink

      Ari knows enough about research. I know a lot about it I know a lot about brains too. Enough to think a cure in a pre-existing human is impossible. The brain even of a newborn is already too complex..

      I think the sense it makes – although this is news to me is if you came up with a cure despite the irresponsibility and probable impossibility of it much like many other things you test it on populations with the least to lose and the most to gain.

      The human subjects paperwork would be a nightmare but I don’t know if you have anything else where the severity of what you experience is enough that you can get intto any clinical trial in the world. It’s a common research concept.

      I have untreatable depression. One might think expending resources on people in the middle ground makes sense but permission can first be gained for people like me because nothing else has worked and if the experimental treatment does it’s a huge gain.

      You can’t get permission to move on to other pools until you have good data as to give a treatment that may have more side effects to someone who could be treated with something less radical is irresponsible.

      Giving a cure to someone who can type they want one – same principle. In all likelihood it would destroy your brain which is why I don’tt think any cure will make it out of animal trials but in methodology if it did that would be the next logical group. You progress upwards from those with the most to gain and the least to lose.

      Autism often makes my life hades. I am not one of those whee autism is wonderful all the time people yet I spent 6 years of my life studying brains, slicing into them, learning the various cells and even if all of that didn’t lead me to say it will be impossible because autism is pervasive there is the issue of it curing you of being you (if we accept it wouldn’t just scramble everything so badly you were never functonal again. )

      Accusing anyone of not knowing anything about research without knowing the usual methodology of human trials is a bit off.

      I hope you come to some terms with your autism. Mine has made the lastt 39 months a hades on earth but it is still who I am.

    • Sam

      You can write and read and expresse yourselve. Too selfish of you to disregard the most servere form of autism for your own benefits.

    • Sam

      You can write and read and expresse yourselve. Too selfish of you to disregard the most servere form of autism for your own benefits.

  • gregboustead

    Please note that this interview features Ari Ne’eman’s opinion, and is not intended to represent all people with autism. For example, as our own editor’s note in the piece illustrates, he prefers the term ‘autistic’ whereas we use ‘people with autism.’ Our Opinion section highlights a variety of voices and perspectives, none of which necessarily represent the views of SFARI.org staff.

    – Greg Boustead, SFARI.org, community manager

    • Richard Johnson Âû

      When you use people with autism you disrespect us. You use a term that implies it is something added to us. You use a term that denotes a cure is possible and preferable. You use a term the denotes a disease. You use a term that places out identity outside of ourselves.
      Would you say a person with gayness. Would you say a person with deafness a person with visionapairness would you say a person with left-handedness?
      Person with autism is a disrepectful PC term of no use.

      • ASD Dad

        I have no problems with the term myself … it is the quality of the concept it is wrapped around that is important. I myself describe my son as a child with autism and as to myself I don’t define myself in terms of disability.

        It is time to move forward from such inflexibility of thinking as to “autism” There is great diversity of culture and identity in the our community… it can be complex disease , genetic syndrome , deletion or mutation and it can also be a perception of the world.

        If any man, woman or child has need because they suffer – medically , socially , physically , economically … then we need to give them a range of options that seek to improve their own quality of life.

        Would I change some of the characteristics that make me …well me ? I may well do so it I had crippling anxiety , depression and epilepsy for instance.

        What would others do ?

  • Eileen Simon

    Greg – My autistic son is 52. He suffered head trauma and asphyxia at birth. For 50 years (half a century) I have been reading the medical literature on language disorders, movement disorders, and diminished social consciousness. I went back to school and earned a PhD in biochemistry in 1975. I returned to my earlier career in software engineering, which was easier to manage with 4 children than working in a biochemistry lab.

    I recently retired. My total focus now is on autism research and writing. I have 6 ebooks on amazon.com and bn.com (Barnes and Noble). Two are memoirs co-authored with my son. He is a savant. Can you suggest how a parent like me might become involved in mainstream research?

  • Claudia mazzucco

    I am a person living with the effects of autism. To my way of thinking, what Ari Ne’eman calls “autistic traits” are in reality the failure of people like him (with a diagnosis of AD) to understand the working and unwritten rules of the society in which they find themselves as “outsiders.” The roots of their predicament are not to be found in a scientific research about autism but in the academic study of sociology.

    • ASD Dad

      “The roots of their predicament are not to be found in a scientific research about autism but in the academic study of sociology.”

      Well said…and the some of the most profound answers.

      Autism research is not defined by medicine, there are expert teachers , carers and parents that have enabled their children to live full and fulfilling lives.

      There are also adults that have achieved that themselves whilst receiving no outside assistance, particularly medical intervention.

      The so called ‘disability’ community is full of achievement that is never publicized because it is just people living their lives.

  • Roger Kulp

    While they are vocal,and high profile,Ari Ne’eman,and the rest of the membership of ASAN speak for only a small handful of those on the spectrum.They need to realize that ASAN only top 5-10% of the highest functioning autistics.They do not advocate for me,or for any of the more seriously disabled persons on the spectrum.Those with what is called syndromic autism.

    In their own way,ASAN is every bit as harmful as anti vaccinationists.Both present a false and misleading picture of what autism is.

    Mr. Ne’eman does not seem to understand that deficits in cognitive and learning ability,are often related to autistic traits.If you correct the deficits in cognitive function and learning disabilities,the autistic traits often will lessen to an equal amount.Brain function is not as compartmentalized as Ari Ne’eman implies here.Nor does the brain exist in a vacuum inside the body.There are any number of biochemical processes that have been found to be involved in different types of autism.Systemic processes that effect every area of brain functioning.

    Ari Ne’eman and ASAN have compeletly ignored years of research about inborn metabolic and autoimmune disorders,that have been found to include autism,and other problems,medical,developmental,and behavioral.Syndromic autism.Treat the underlying cause of these types of autism,and both the medical issues,and the brain function improves.It is that simple.This can include successful treatment and management of autism.

    Members of ASAN have gone public saying that if you do treat autism,it is both the equivalent of Nazi eugenics to wipe out autistic people,and it destroys who you are as a person.Unless I hear otherwise,I am assuming Mr. Ne’eman feels the same way.

    As someone who has treated my autism,as an adult,I can say that nothing is futher from the truth.I am 54 years old.I have a childhood diagnosis of autism that was basically verbal,but very low functioning.I had profound developmental delays,learning disabilities etc.Had it not been for my mothers intervention,I would have ended up in an institution.I also had many unexplained medical issues,and frequent regressions.At age 49,I was found to have severe genetic problems with folate and B12 metabolism.At age 52,I was found to have Cerebral Folate Deficiency.I also very likely have genetic mitochondrial disease.I am trying to get my insurance to cover some very expensive genetic tests.

    I have stunned a couple of the top experts in the US in autism related metabolic diseases,who did not think these neurometabolic diseases could be treated this well in someone my age.It kept me out of a group home when my mother died.I am perhaps the only autistic adult in the world in my position.Which is sad.I am sure there are other low functioning adults in residential treatment facilites who could benefit from the treatment I have.But ASAN does not speak or advocate for these “hidden” autistics.

    I have spent a great deal of my life in the last few years learning about genetic and medical aspects of autism.I would love to be able to assist researchers in these areas.I can provide references from top doctors that validate my experiences and my knowledge.If there is any way I can do this,please let me know.

  • Harold L Doherty

    Greg Boustead, SFARI.org, community manager with respect SFARI is disingenuous to suggest that Ari Ne’eman’s opinions are solely his own and do not represent all autistic persons. The tile of this article refers to Questions for Ari Ne’eman partnering with participants. That is a clear implication that he can speak for autistic particpants. His commennts reflect that clearly implied representational character. Nor is it the first time, with all the autistic persons in the world that the SFARI has gone to Ari Ne’eman in search of “autistic” opinion. In May 2013 he was featured on SFARI “Will new DSM-5 autism criteria impact services?”

    It isn’t clear to me as the father of a severely autistic son with intellectual disability and seizures ( for the benefit of SFARI a common trifecta on the severe, Non Ari Ne’eman end of the autism spectrum ) exactly what limitations in daily functioning AN suffers from. He speaks at gatherings of professional and congressional leaders on autism and has been interviewed often by major media. Where is the autism that impresses SFARI so much that they seek his insights into what for many OTHER persons is an actual severe disorder. Make all the excuses you want SFARI misrepresents the challenges faced by those with serious autism deficits by presenting the views of this very high functioning individual as representative of the autism spectrum without owning up to what you are doing.

  • Lydia Brown

    I’m autistic. I also have other disabilities.

    I’ve been doing autistic activism for a long time now, and I keep hearing the same tired arguments.

    “You’re just high-functioning; you don’t know what it’s really like to be disabled; you don’t speak for MY CHILD who has autism and smears feces/wears diapers/head bangs/has severe GI issues/has seizures/doesn’t speak/etc.”

    Firstly, anyone who is autistic automatically knows more about what it’s like to be autistic than anyone who isn’t autistic. People who say, “you don’t have XYZ symptoms, so you can’t speak for my child!” make no sense if they’re not autistic either, because how is someone who isn’t autistic at all supposed to have a better understanding of autism than someone who is autistic?

    Secondly, an incredibly diverse group of autistic people do the work of neurodiversity and self-advocacy. Some of us have the trappings of being “high-functioning” (which is itself an incredibly arbitrary label) — going to college, having a job, using verbal speech most/all of the time, living more or less on our own. A lot of us don’t. I know so many autistic activists doing neurodiversity work who are survivors of repeated sexual assault, who don’t use verbal speech ever (or only rarely), who have seizures, who have severe gastrointestinal issues, who have chronic illnesses, who have been or are now homeless, who have been or are now unemployed (and chronically so), who never went to college or couldn’t stay, who can’t live alone.

    The point is not which of us or what percentage of us have what skills or to what extent, but rather that we’re all autistic, and thus we have a better understanding of each other than anyone who isn’t autistic could possibly hope to have.

    The accusation that the only autistic people who do self-advocacy or support neurodiversity are “mild” or “high-functioning” is a distraction from the real issues. No more distractions.

    Whenever research about a marginalized or minority group is led entirely or mostly by people who aren’t from that group, the research is a.) not going to reflect the priorities or interests of its subjects, b.) going to be extremely vulnerable to flaws in framework, model, design, implementation, and interpretation of data, and c.) inherently questionable. Researchers must include actually autistic people in every phase of research — from posing the question to designing the study to conducting the experiments to interpreting the results.

    Honestly, if you’re going to criticize Ari Ne’eman as not representing the full diversity of the autistic community, your arguments are misplaced. He is a college-educated straight white man from a class-privileged background. The autistic community, if anything, has a crisis of leadership in that we lack real, meaningful representation of non-college educated autistic people, autistic people of color, LGBTQIA autistic people, low-income autistic people, and autistic women. Ari can’t speak for those of us who fall into one or more of these further underrepresented populations. But he absolutely can speak for the politicized autistic community, and these straw men fallacies about all the supposed reasons that this article can’t represent autistic people are shameful.

    Further reading, I suggest:

    – “You don’t speak for low functioning autistics” at http://lysikan.tumblr.com/post/106147681470/you-dont-speak-for-low-functioning-autistics

    – “Non-speaking, ‘low-functioning'” at http://www.shiftjournal.com/2012/01/11/non-speaking-low-functioning/

    – “More Problems With Functional Labels” at http://ollibean.com/2013/09/26/problems-functioning-labels/

    – Everything at http://wearelikeyourchild.blogspot.com/

  • Anonymous

    There was a study linking jaundice to *early diagnosis* of autism. No-one consulted autistics about it. They instead zoned out logic, brilliance, ‘other’ thinking. As a result they totally missed the obvious: jaundiced babies get observed for side-effects, complications, and are more likely to receive additional paediatric care and parental watchfulness and concern. What a waste of $100,000. Part of over a $billion in waste pursuing mirages and conjuring-up phantoms… and for what? Or whom? Not autistics, that much is certain. SFARI is < <>> of the problem. Autistics are < <>>.

  • John Greally

    There was a study linking jaundice to *early diagnosis* of autism. No-one consulted autistics about it. They instead zoned out logic, brilliance, ‘other’ thinking. As a result they totally missed the obvious: jaundiced babies get observed for side-effects, complications, and are more likely to receive additional paediatric care and parental watchfulness and concern. What a waste of $100,000. Part of over a $billion in waste pursuing mirages and conjuring-up phantoms… and for what? Or whom? Not autistics, that much is certain. SFARI is < <>> of the problem. Autistics are < <>>.

  • Shain M. Neumeier

    So, how autistic do I have to be (or seem to a neurotypical person) to have anything worthwhile to say about autism? Does my seizure history count? Do I get credit for stomach problems? How close to the line does it get me that I can be reduced to screaming “No, stop it” by certain volumes and frequencies of sound; that more food textures than not make me sick; and that I’ve got a terrible startle response to being touched when I can’t see it? Does having needed OT for years and having had a couple ER visits due to how bad my gross motor skills were get me anywhere near it?

    (And I’m guessing no one’s going to be counting stuff like memorizing entire TV shows or reading thousands of pages on a subject of interest or teaching myself to make things that take weeks of very careful, detail-oriented work. Because if it’s good, it’s not “real autism.”)

    Oh wait, I guess it’s the fact that I can speak and that I did well in school (and all the things that followed from that) that discounts me — more than any neurotypical person, even — from having information or perspectives worth contributing about how brains like mine work. Isn’t it convenient that that’s how that works out: that the only autistic people who know what autism is really about are the ones who are assumed to be unable to communicate that information?

  • Debbie Miller

    Does anyone know how I can contact Ari Ne’eman or anyone else who is interested in collaborating with a social research methodologist? I am a 53-year-old autist, identified in Dec 2014, and finishing my PhD in educational psychology with a focus on quantitative, qualitative, & psychometric methods in August 2015. My 22 years of research experience (and my autistic sensitivities) allow me to design user-sensitive data collection strategies. From my experience taking tests for my own identification (and from my experience complete poorly-designed instruments in many walks of life), I firmly believe I can assist in moving the field of autism identification forward. Thanks in advance to anyone who can help me make the right connections.

  • Debbie Miller
  • Eileen Simon

    Leo Kanner’s description of autism was the basis of my son’s diagnosis in 1967. Kanner’s description of “metaphorical language” was most relevant, and only parents were able to inform Kanner of the meaning of their children’s strange comments. Metaphorical language came to be understood as “delayed echolalia,” use of phrase fragments heard in one context, and applied verbatim in new contexts.

    Roger Brown and Ursula Belugi provided the best analysis of how, in contrast, children normally learn to speak. Normal speech development is based on the ability to hear stressed syllables. Use of stressed syllable leads to normal “telegraphic speech,” use of words in new arrangements and appropriate to new contexts. Noam Chomsky described this ability as “grammatical transformations.”

    My son suffered head trauma and asphyxia at birth. In the October 1969 issue of the Scientific American, I found the article by WF Windle on brain damage caused by asphyxia at birth. Most prominent was severe damage in relay centers of the brainstem auditory pathway. For me this could explain my son’s difficulty “hearing” stressed syllables. This was the beginning of my reading everything I could find on language development and language disorders.

    Injury of the auditory center in the midbrain (the inferior colliculus) leads to loss of the ability to comprehend language. Several case reports have been published.

    Social disorder, lack of shared interest, etc. are euphemisms intended to deny brain injury as the basis of language problems in autism. Sadly, my son who is a savant, still at age 52 has auditory processing problems, and his speech remains stilted. Auditory processing disorders cannot be considered part of any neurodiversity spectrum. Language disorders in childhood are as serious as aphasia in adults, and the result of brain damage.

    • Lydia Brown

      I am autistic and have pretty severe auditory processing problems. I’d love for my auditory processing disabilities to be less than they are, because they cause me actual anxiety, pain, and difficulty with function. But that — and my autism — are part of neurodiversity, because all that that word means is that there are different types of brains in the world, for better or for worse. Neurodiversity isn’t an opinion; it’s a scientific reality.

      • Eileen Simon

        Neurodiversity as a “scientific reality” is your opinion, but you have not convinced me.

        Language is the distinguishing feature of the human species. People who have lost or never acquired language are handicapped. Research should be conducted by people well-trained in science, for good reason. My education in science, plus 50 years trying to help my disabled son, should qualify me as a participant in research.

        Unlike autism “self advocates” I am not politically savvy, but I will continue to try to be involved in discussions of handicaps. Auditory processing disorder should be a priority.

        • Lydia Brown

          Try raising that argument with the entire d/Deaf community.

          • Eileen Simon

            Thank you for bringing up the issue of deafness! Language has always been the priority for deaf education. The importance of the cochlear implant for young deaf children is for learning language. In PubMed keywords”cochlear implant language” brings up 2289 citations this morning.

            For starters, I look forward to reading the full article by A. Sharma et al. on cortical development and auditory neuropathy spectrum disorder! The abstract begins with, “Cortical development is dependent to a large extent on stimulus-driven input.”

            Cortical development is also dependent on trophic neurotransmitters produced in relay centers of the brainstem auditory pathway. See papers by E. Fraud et al. The most recent, published in April 2015 appears to be a good summary of their research, which I also look forward to reading.

            The biochemistry of neurotransmission within specific circuits of the brain is important for understanding brain maturation and connections required for language and other cognitive capabilities.

          • Eileen Simon

            Typo in my response above. In PubMed lookup papers by E Friauf :
            Friauf E, et al. Synaptic plasticity in the auditory system: a review. Cell Tissue Res. 2015 Apr 21.

            First to catch my attention years ago was:
            Friauf E, Lohmann C. Development of auditory brainstem circuitry. Activity-dependent and activity-independent processes. Cell Tissue Res. 1999 Aug;297(2):187-95.

        • yelekam

          you seem to be thinking that autistic people don’t have language. Actually all autistic people, including those who are erroneously labeled severe or low functioning, have a capacity for language. But this capacity for communication does not always express itself in traditional nuerotypical ways. If you would like more information, try reading the works of William Stillman. He is a man who made a career using his Asperger’s and capacity of understanding to understand and interpret autistic children across the spectrum and thus help them to gain better and more effective treatment.

  • Stiof MacAmhalghaidh Âû

    I see some comments here from a couple of people who dismissed Ari’s “right” to speak on behalf autistics. I also see a couple of awkward near-apology explanations from Greg Boustead of Sfari. All these dismiss or constrain Ari’s voice, and the voice of any (and therefore all) autistics when speaking on behalf of our community.

    I also see some determined, eloquent rebuttals from a variety of autistic voices. This article has of course been shared extensively online throughout the autistic community, and Lydia’s thorough response in particular has been applauded.

    But all that is just pushing back. The integrity and validity of our community is attacked, and some of us have responded here, many more elsewhere, in a mixture of distress, defiance, determination. This happens daily for our community, not uncommonly it happens several times a day.

    On top of this is the seemingly endless battle against real phtsical and psychological abuse perpetrated by fraudsters making money selling crank “cures”, peddling stories of fear and even hate.

    Lots of defending going on. Lots. Daily. And it gets wearing, y’know? Really. It wears you down.

    And this says nothing yet of the underlying sensory and neurological assaults this modern world batters *every* autistic with each hour of the day. Every autistic. Some more than others, yes. Some in this way, some in that… but each of us always and incessantly.

    But here’s the thing. Today is June 18th – Autistic Pride Day. Not Autistic Defence Day. Today is about standing up and saying YES!

    Iam autistic. This is something I did not get a choice in. It is who I am, for better *and* for worse. My name is Stiof MacAmhalghaidh and I am autistic. And I have a smile on my face. I also have tears on my face and I’m stimming like hell right now but I have a smile because I am proud of who I am and I know I am not alone.

    I have my community and that community is proud.

    A community, not an elite. Not a small handful of us college-educated white males. A community. Like all healthy communities ours is diverse. It encompasses and embraces the rich and the poor, the troubled and the joyous, the hopeful and the despairing, the traumatised and those who care for them.

    And there’s the thing. This community includes not just autistics. It opens its doors and its arms happily to those who are not autistic – immigrants from a foreign land so to speak – who embrace the principles we hold dear and which make us strong. I could name so many, people I work with every day, most of them quietly and without public notice. We work side by side, as partners, in mutual respect, with equal dignity.

    There are five words there which I’ve chosen very deliberately: Partners; Mutual; Respect; Equal and Dignity.

    It can seem at times that autistic advocates seek to rob others of *their* right to advocate. I understand that. A lot of us do actually. We know what it feels like to face being disposessed and having our voices silenced. So, to the parents, siblings and others out there who feel frustration when they see Ari Ne’eman talking on behalf of autistics: Don’t be angry, nor sad. Please. We are your friends. What we seek is to partner with you, we seek your respect and offer ours in equal measure, we expect to be treated with dignity and offer the same in equal measure. Together, we are unstoppable.

    And yet that thought rises up… But you cannot understand *my* child. Yes, we do. Really. What we do *not* understand are the personal details of each person’s experience of life, but that’s inevitable. There is a huge difference between understanding and advocating for a *person* and understanding and advocating for a *community*. Ari cannot advocate personally for every autistic. Nobody can. What he can do is advocate for the broader community, and that is what he does. Appreciating the difference here is crucial.

    The words of Ari Ne’eman do not steal the voice of individuals. They *add* to them.

    Don’t feel frightened by us. Join us. We will embrace you. Because we are proud and filled with hope and those are good things – Things worth sharing. Things that make us strong *both* as a community and as individuals.

    Pax ~MAQQI Âû

    • Teresa P.

      Maqqi, you know me well. I stand by you and your words here. We are all human. We all need to accept a d work together! When doing research, the individual(s) should be included in the research team no matter what.

  • Anon.

    I find it both shocking and incredible that SFARI elected to promote the views of an individual who has such a long and documented history espousing an anti-science agenda. His typical lawyerly prevarications aside, Mr. Ne’eman’s documented opposition to basic genomic research, an area that to my knowledge he has no background or expertise in, has been available and known for years. He and his followers play the “eugenics” card at any and all opportunity in an effort to scuttle investigation. The “power equalization”, “formal involvement”, and needing the federal government to “step in” he speaks of is all his code for he and his allies controlling the NIH’s scientific agenda. Make no mistake, he and his supporters in and out of government are all about political control. The letter from a handful of uninformed Members of Congress to the NIH he references is presumably the one from Rep. Jan Schakowsky rehashing her failed amendment to the Autism Cares Act. The amendment was all about hijacking research funding from the uses Congress intended via the NIH to the the science Ne’eman approves of. In other words, none. “Nothing about us, without our input” is fine with me. “Nothing about us unless we say it’s OK” is not. Ne’eman speaks for very few individuals with Autism Spectrum Disorder and his impact on policy of is already disturbingly, inappropriately, and dangerously large. SFARI ought to do a better job of vetting. This guy would be absolutely delighted to put you folks and your grantees out of business.

    • Roger Kulp

      Anon makes a very valid point about Ne’eman and his opposition to genetic research and databases such as those done by SFARI.Mr. Ne’eman has said as much in his own words.Here is one example of many.
      http://www.dsq-sds.org/article/view/1059/1244

      Start at “Curing Autism vs Quality of Life”

      We are quick to call out antivaxers when they evoke the Nazis and go around talking about wearing a Star of David for vaccines,but we give ASAN and the neurodiversity movement a free pass when they evoke Nazis and eugenics.

      I agree.We must say no.We do not want the likes of Ari Ne’eman controlling autism research,any more than we need more senseless research into vaccines causing autism.Ne’eman,ASAN,and their fellow travelers in the neurodiversity movement are every bit as much a danger to the advancement of science as the antivaxers are.

      • Sam

        Please elaborate how successfull the current research has been and which individuals on autism it has benefited. Keep your opinions to yourself, if you cannt provide any facts

  • Eileen Simon

    Traits of autism are all neurological signs: (1) Language disorder, (2) Repetitive movements, and (3) Diminished social consciousness:

    (1) Aphasia (loss of language) has been a major focus of research for more than 150 years, and led to discovery of the language areas in the frontal and temporal lobes. Maturation of the language areas continues during the first 5 years after birth, and is dependent on trophic neurotransmitters produced in the brainstem auditory pathway.

    Aerobic metabolism is higher in the auditory pathway than anywhere else in the brain. The auditory pathway is especially vulnerable to perinatal injury. Prenatal exposure to valproic acid (VPA) damages relay centers in the auditory pathway, as does asphyxia at birth. Prenatal VPA and complications at birth are known predispositions for autism.

    (2) The basal ganglia are also sites of high aerobic metabolism, and also vulnerable to perinatal injury. Injury of the basal ganglia by bilirubin causes movement disorders. Yes, reports of high bilirubin are important predispositions for autism and Asperger syndrome.

    (3) Diminished social consciousness is part of diminished level of consciousness (LOC), a serious aspect of most neurological disorders.

    Research on brain injury underlying most cases of autism is important. I will continue to try to partner with mainstream participants.

  • Roger Kulp

    Neurological signs that can be caused by treatable metabolic disorders.Not that Mr. Ne’eman seems to know anything about this.It seems like it would be the type of research ASAN would want to put an end to.But the results of treating these disorders are life changing,as I know personally.You can read about these metabolic disorders here.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4073259/
    http://www.generationrescue.org/assets/Published-Science/frye-autism-folate-receptor-autoantibodies-simplified-2011.pdf
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3578948/

    This site is interesting,too.Note autism is just one of the conditions listed here.

    http://www.tidebc.org/pa/patients.html

  • Harold L Doherty

    What is shameful in these and other similar discussions is people with the ability to communicate in text and email at very high conceptual levels trying to silence the parents and other caregivers of persons with severe autism disorders who CAN NOT COMMUNICATE as you can. That inability to communicate prohibits my son from describing the conditions that afflict him internally and cause him pain. That is A REAL WORLD distinction, a condition which those who post arguments on sites such as this DD NOT SHARE and have not right to pretend that do. You do not speak for my son. You can not speak for my son. You do not have the same severe communication challenges as my son. Speak for yourself as an individual.

    • yelekam

      I would refer you to the works of William Stillman, a figure who has helped establish communication with autistic people, who the were assumed could not communicate

  • Eileen Simon

    “Social disorder” and failure to engage in “shared interest” were euphemistic explanations adopted to minimize the seriousness of brain injury that prevents normal language development. The self advocacy movement uses these terms as explanations for something totally different from the severe disability described by Leo Kanner.

    I doubt the self advocates could ever welcome my son. He would be considered too weird. But he is a true savant, and has written two memoirs with me. I published these as ebooks on amazon.com and bn.com (Barnes and Noble). And, “self advocates” might object to scientific discussions by me in these books.

    Parents of children with severe Kanner autism have been pushed aside by mainstream autism researchers. Self advocates have their social network, and they are supported by SFARI and other mainstream organizations. Parents struggling with understanding and helping severely afflicted autistic children deserve greater inclusion in research efforts.

    • yelekam

      Are you not aware of the Autism described by Dr. Hans Asperger, the other father of Autism diagnosis. Dr. Asperger’s work described a wide variance among Autism (ranging from the so called high functioning to the so called severe).
      With Kanner, he intentionally only studied those who looked to be most severe. Kanner had a history long before his work in autism, of trying to enlarge hist reputation by making his medical discoveries look like they were rare.

  • Roger Kulp

    Harold,Eileen I do think this may have something to do with an increased number of people being diagnosed at the higher functioning end of the spectrum.Many as adults.The sheer numbers of these people,and their very vocal nature,is what has pushed the most severely disabled autistics aside.Harold has written repeatedly in his blog about what he calls “the royal we”,and I know just what he means.Ne’eman and ASAN repeatedly use language that implies they speak for the entire spectrum of autistics,when they really are just speaking for themselves.If they wish to win more people over,they need to change their message to clarify this,and stop trying to speak for the more severely disabled.

  • Eileen Simon

    Harold L Doherty – Thank you for initiating discussion here about who should partner with mainstream autism researchers.

    Roger Kulp – Thank you for pointing out Harold’s excellent blog! I was especially interested by his dialogue with JE Robison. Harold, your son Conor’s pictures remind me so much of my son, Conrad, in whose memory I setup a website 15 years ago, conradsimon.org. I have told his whole sad story there.

    Question: Who are the doctors diagnosing college students as autistic?

    “Self advocates” are seriously undermining badly needed research on causes and life-span supports for those whose autism was diagnosed in early childhood.

  • Eileen Simon

    In response to Lydia Brown’s question above about language and the deaf community, I suggested putting keywords “cochlear implant language” in PubMed. Putting in “language development” may be more relevant.

    I suggested looking up papers by E. Friauf on brain maturation guided by trophic neurotransmitters produced in brainstem auditory centers. These centers are also sites of auditory signal tuning. Injury in the midbrain site (the inferior colliculi) results in loss of the ability to comprehend spoken language. This site is also most severely damaged by asphyxia at birth, and this should be investigated as a factor in developmental language disorders.

    Minimal damage and disruption of brain maturation should be investigated as possible reasons for neurodiversity, especially in people with auditory processing disorders.

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