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Young Autistic and Stage Struck

8 Apr

Channel 4 in the UK has this show: Young Autistic and Stage Struck. I have to see if I can download it from iTunes, as it looks like it may be very cool.

This landmark series follows nine autistic youngsters as they attempt to produce their very own stage show, under the guidance of theatre professionals who’ve never worked with an autistic cast before

The synopsis for Episode 1 looks good:

The first episode of the series introduces the first five youngsters. Twelve-year-old Ben has high functioning autism: he’s exceptionally bright but experiences acute loneliness. But as the project develops he starts to bond successfully with the other youngsters.

Andrew, 17, is classically autistic, and despite limited social skills, he is very keen to have his first proper relationship with a girl. From day one he starts getting closer to Claire, 19, and takes her on the first date of his life: a night at the cinema. Claire is a talented singer and pianist who also struggles socially.

Mollie, 11, is prone to tantrums and lengthy sulks, which test her mother’s considerable patience. She suffers from PDA – Pathological Demand Avoidance – a pervasive developmental disorder with symptoms including mood swings, language delay and obsessive behaviour. A talented singer, Mollie was diagnosed with autism at four.

Eleven-year-old Jozsef is more challenged by his autism, but his playfulness makes him endearing to others and soon turns him into the group joker.

Basically, it looks like a reality show where they recruit a group of autistic kids, working with the National Autistic Society, and together with Lyric Hammersmith help the kids workshop a show.

What a cool idea.

Polly Tommey poses as advocate for autistic adults

7 Apr

Polly Tommey is in the news again with this piece in the Guardian, Attention-grabbing antics for autism. It concerns her latest poster campaign, timed to coincide with the start of the General Election.
Hello boys polle tommey poster

I have left the following comment.

I have followed Ms Tommey’s attempts to present herself as a mainstream autism advocate for some time now on my blog, Action for Autism, and your headline,”Attention Grabbing Antics” is apt. If Ms Tommey wants us “to move away from the discussion about vaccines because she knows how divisive it is” she could make a start by removing her current Face Book campaign, “Mothers Supporting Andrew Wakefield’s Work.”

Ms Tommey complains about “bickering.” But other organizations have no problem working together. The Autism Act came about with the support of 15 autism organizations working together. Many of their members served on the External Reference Group for the Autism Adult Strategy for England which reported to the government. They mobilized their members to submit over a thousand responses to help shape government strategy. This will be reflected in the statutory guidance that will be published later this year. Ms Tommey’s contribution to all this was nil.

She states that “we haven’t a clue what to do with adults with autism.” That is because she and her supporters have spent the last 10 years arguing that autism is a biomedical disorder of childhood that is treatable with the untested and unproven interventions marketed by her husband. The National Autistic Society has taken a different stance with its Don’t write Me Off campaign Most of us are not interested in what to do with autistic adults. But we we are trying to find out what we can do for them and what they want for themselves.

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U.S. Government calls for proposals in autism research

7 Apr

Do you want to know what sort of research the U.S. government is considering funding? Well, here is the announcement This call for grant proposals is based directly on the Interagency Autism Coordinating Committee’s (IACC) Strategic Plan.

Last amongst the list, and likely in terms of funding, is “services”. This is the one are where adults are specifically mentioned.

Here are a few lines pulled out for those who may not want to read the entire call. Emphases are added by me:

Under epidemiology:

Studies of the genetic and environmental epidemiology of autism to determine risk and protective processes in the etiology of autism…

So, yes, environmental causation is being funded. Also under epidemiology:

studies of their developmental course across the life-span

This is good and much needed: an understanding of how autistics develop across the lifespan. This is not, after all, a childhood disorder.

Yes, there is funding for treatments, specifically “Pharmacological/Biological Interventions”. These include the opportunity for the alternative medical community to prove itself:

studies aimed at developing and testing the efficacy and safety of botanical and dietary supplemental CAM agents that specifically target symptom management

Here is a more full version of the announcement:

Purpose

The purpose of this Funding Opportunity Announcement (FOA) is to encourage research grant applications to support research designed to elucidate the etiology, epidemiology, diagnosis, treatment, and optimal means of service delivery in relation to autism spectrum disorders (ASD).

In response to the urgent public health significance of Autism Spectrum Disorders (ASD), Congress passed the Combating Autism Act (CAA) of 2006. Through this Act, Congress intends to accelerate the pace, and improve coordination of scientific discovery in ASD research. The Strategic Plan for ASD Research, a requirement of the CAA, was developed with the input of the scientific community, as well as advocates and advocacy organizations, including parents, providers, and individuals with ASD. The plan consists of short and long term research objectives across a range of topics, including those relevant to the heterogeneity of ASD. This FOA is intended to support the broad research goals of the Strategic Plan for ASD Research. (http://iacc.hhs.gov/reports/2009/iacc-strategic-plan-for-autism-spectrum-disorder-research-jan26.shtml),

Research Objectives

Autism Spectrum Disorders share a cluster of impairments in reciprocal social interaction, communication, and the presence of stereotyped behavior, interests, or activities. These complex disorders are usually of lifelong duration and affect multiple aspects of development, learning, and adaptation at home, in school, and in the community, thus representing a pressing public health need. The etiologies of these disorders are not yet understood, but may include a combination of genetic, metabolic, immunologic, or infectious or other environmental influences.

Clinical research involving these disorders requires well-integrated, multi-disciplinary, methodologically-rigorous scientific approaches and access to a sufficient number of well-characterized patients with these disorders. Basic research into the pathophysiology of autism and autism spectrum disorders, including research on brain mechanisms and genetics, is of special interest. Also of high priority are clinical and applied investigations that may lead to the development of diagnostic research instruments, treatments, and interventions, including complementary and alternative medicine [CAM] strategies. Specific areas of interest thus include epidemiology, early identification and diagnosis, genetic studies, brain mechanisms, communication skills, cognitive neuroscience, psychosocial (behavioral) interventions, pharmacological and other biological interventions, and support and rehabilitative services across the life-span, including adulthood and the transition to adulthood.

Areas of interest include, but are not limited to, the following:

Epidemiology: Studies of the genetic and environmental epidemiology of autism to determine risk and protective processes in the etiology of autism, including environmental exposures during pregnancy and early childhood; longitudinal studies of high-risk populations; epidemiologic research on interactive genetic and environmental factors or processes that increase or decrease risk for autism; research on the expression of the full range of autism spectrum disorders; studies of their developmental course across the life-span; studies that characterize the range of expression within families; and research on co-occurring features, especially research that characterizes and quantifies risk and protective processes associated with co-occurrence. Also of interest are clinical epidemiologic studies of autism spectrum disorders in clinical settings, including studies of clinical decision-making in personal-encounter care for individuals and families.

Screening, Early Identification, and Diagnosis: Key diagnostic and phenotypic features associated with various stages of development; development of new screening tools for use in a variety of settings; assessment of comorbid features including hyperactivity, attentional or executive dysfunctions, and epilepsy; the creation of new measures to be used in longitudinal studies, and measures that further differentiate the subtypes of autism spectrum disorders; and, developmental factors relevant to reliable and valid diagnosis.

Genetic Studies: Family-based or population-based genetic analyses that aim to 1) Identify specific susceptibility genes using candidate gene/region based approaches, whole exome as well as whole genome sequence approaches; 2) Investigate epigenetic mechanisms and long range control of gene expression; 3) Conduct high-resolution mapping and positional cloning studies; 4) Detect locus heterogeneity; and 5) Analyze the interaction of autism susceptibility genes with environmental exposures and/or genes responsive to environmental insult. An area of particular interest is the effect of genetic factors on therapeutic drug response in individuals with ASD (see Pharmacogenomic Studies, below).

Brain Mechanisms: Studies of brain mechanisms underlying the development, regulation, and modulation of behaviors characterizing autism and autism spectrum disorders, particularly those mechanisms involving communication and social interaction; studies of brain mechanisms and biological factors underlying autistic regression, or the loss of previously acquired skills; studies of brain mechanisms involved in the development of abnormal electroencephalograms and epilepsy and studies to clarify the subtypes of seizures and seizure disorders in autism; studies to define the neurobiological basis of neurological abnormalities and neuropsychiatric symptoms and the exacerbation of these symptoms, including the role of neuroimmune/autoimmune factors and mitochondrial dysfunction; studies that seek to define basic processing deficits using neuropsychological and cognitive neuroscience techniques; studies using animal models to examine brain dysfunction related to autism and autism spectrum disorders, based on either genetic or environmental factors or their interaction; studies using novel reagents and tools to identify molecular, cellular, or developmental mechanisms distinguishing autism spectrum and control subjects.

Shared Neurobiology of Autism with Fragile X, Rett Syndrome, and Related Disorders: Studies of developmental and functional processes, pathways, and brain mechanisms that will lead to an understanding of shared etiology or pathophysiology among these disorders. Analysis of autism-related neurobiological and behavioral phenotypes in related “single gene” disorders. Of particular interest are projects that focus on basic research and/or preclinical testing in model systems to develop and assess the safety and biological activity of novel therapeutic compounds that could be used to treat autism and related disorders. There is also significant interest in analyses that would identify useful and specific clinical endpoints that would register measurable improvements in response to treatment interventions in clinical populations as well as studies that would facilitate future development of clinical trials in these populations.

Cognitive Science: Developmental studies of relevant behaviors during infancy including attention to social and nonsocial stimuli, affective behavior, gaze, vocalization, imitation, initiative, reciprocity, attachment, play, compliance, and self-recognition and their emergence in children with autism and autistic spectrum disorders; research on the delays and deviations in social behavior and cognition during preschool and middle school, including empathy, receptive social cognitive deficits (i.e., difficulties understanding others), and expressive difficulties; studies leading to more sophisticated tests of higher cognitive functioning, especially in social, communicative, reasoning, and problem-solving areas, as well as tests of basic attentional, emotional and cognitive deficits that may underlie these deficits or their precursors; studies of theory of mind, of unconventional verbal behaviors, and of the sensory-motor factors involved in relevant social cognition; and the development, validation, and refinement of interventions designed to address deficits in complex social and cognitive abilities or their developmental precursors; interventions designed to lessen or remediate cognitive deficits.

Communication Skills: Longitudinal, developmental studies of behaviors that are precursors to later communication and their emergence in children with autism and autistic spectrum disorders; sensory, motor, and social-cognitive impairments that impact interaction and communication; predictors of loss of or regression in expressive language abilities; interventions designed to remediate communication and related deficits across the life-span.

Pharmacological/Biological Interventions: In addition to pharmacological agents that specifically target the core features of autism and autism spectrum disorders: studies of the efficacy and safety of pharmacological and combined treatments for the most common and impairing psychopathology associated with autism (e.g., hyperactivity, impulsivity, aggression, self-injury); studies that relate characteristics of individuals (or diagnostic subtypes) to therapeutic response and treatment outcomes (also see Pharmacogenomic Studies, below); new approaches to treatment that build on advances in neuroscience, genetics, immunology, and other neurobiologic fields; identification and validation of novel treatment targets and molecular screening approaches or biomarkers that assess effects on key biological, neurodevelopmental and/or behavioral endpoints disrupted in ASD; focused interventions that test specific theories or hypotheses regarding possible neuropathogenesis; studies that address the benefits of combined drug and cognitive, behavioral, or psychosocial interventions; studies aimed at developing and testing the efficacy and safety of botanical and dietary supplemental CAM agents that specifically target symptom management; development of innovative methodologies and outcome measures.

Pharmacogenomic Studies: Analysis of SNP and DNA sequence data that 1) Predict therapeutic response or adverse reactions to drugs; 2) correlate drug response profiles with intermediate phenotypes (e.g., brain imaging, neurophysiology, learning and memory, sustained attention); 3) identify biomarkers to resolve clinical heterogeneity and heterogeneity of therapeutic drug response; 4) apply high-throughput approaches to screen for drug candidates metabolized by or inhibitors of polymorphic drug-metabolizing enzymes, e.g., CYP2D6; 5) studies of genetically determined functional changes in nuclear and cell surface receptors to explain the ineffectiveness of therapeutic agents and adverse or paradoxical drug responses; 6) studies of allelic variation occurring in individual transporter genes that are associated with a functional consequence.

Psychosocial Interventions: Studies to develop new treatments (e.g., behavioral, cognitive-behavioral, mind/body and manipulative therapies) and that validate, refine, and compare approaches to the treatment of persons with autism and autism spectrum disorders and their families, as well as studies that analyze and define the critical features of effective intervention; studies that relate characteristics of individuals (or diagnostic subtypes) to treatment outcomes; research on relevant contextual factors including physical and community environments, parent-child and sibling-child relationship factors, and peer-child interactions; studies addressing generalization or the transfer of learning from one setting to another; studies that develop and test interventions for infants and toddlers who are at-risk for autism spectrum disorders; studies that develop and test interventions to outcome in school and community settings throughout the lifespan; development of innovative methodologies and outcome measures.

Services Research: Research on the organization, delivery, coordination, and financing of services for persons with autism spectrum disorders, and their families, within or across service settings; studies aimed at better identifying and addressing changes in service and rehabilitative needs across the life-span, including during transitions from childhood to adolescence, and adolescence to adulthood; interventions to improve the quality and outcomes of treatment and rehabilitation services; studies to develop improved measures of adaptive capabilities for children, adolescents, and adults with autism spectrum disorders; studies of ways to coordinate or integrate services across settings including specialty mental health, general health, and other settings such as educational, vocational, and housing services, in order to maximize receipt of appropriate services; and research on the economic factors effecting the delivery of needed services and treatments including cost-benefit, cost-effectiveness, and cost utility analyses of service interventions.

General Election called in the UK

6 Apr

The leaders speak about autism:

Gordon Brown

Too often people with autism don’t reach their full potential because those around them do not understand the condition. On United Nations World Autism Awareness Day, everyone should challenge their perceptions. I don’t find it acceptable that many want to work but only 15 per cent of people with autism are in paid employment. Or that many want to live independently but almost 50 per cent. of adults with autism live with their parents.Recognition and awareness in frontline public services is critical to giving those with autism the support they need. That’s why our recently published national autism strategy Rewarding and Fulfilling lives, is backed by legislation and sets a clear framework for creating that support.

David Cameron

United Nations World Autism Awareness Day is an important opportunity to raise awareness of the challenges that people with autism and Asperger Syndrome can face especially during times of economic difficulty. At present too many people with autism are being held back from fulfilling their potential. We need to break down the barriers which stop them doing so, including barriers to work. As a compassionate society we need to provide for those who cannot work, so we support moves towards providing personal budgets for those who require constant care to make sure they get the support they need. People with autism or Asperger Syndrome who are looking to work or training to help them into employment, need the right kind of help at the right time. Tapping the expertise of the private and voluntary sectors is one way we can make sure the assistance we provide is tailored to people’s individual services, helping lift people out of poverty and promoting greater independence.

Nick Clegg

‘It’s deeply, deeply alarming that families are more likely to live in poverty if they have a child or adult who suffers from autism or Asperger’s Syndrome. More needs to be done to change this. There is a challenge facing politicians of all parties to ensure that these families are not forgotten. It is so important on UN World Autism Awareness Day we highlight the difficulties facing those who live with autism and Asperger’s Syndrome and look for a way forward. It is vital that every adult and child with autism and the parents, carers and family who look after them with such passion and dedication receive all the support they need. From targeting extra cash to schools helping the children who need it most to giving carers a full week off every year, Liberal Democrats are fully committed to ensuring that those living with autism or Asperger’s Syndrome get a fair deal.’

Did a teacher try to sicken an autistic student?

6 Apr

That is the question posed by a lawsuit, discussed in Lawsuit: Ind. teacher tried to sicken autistic boy. The student is autistic. He is also allergic to peanuts. The allegation is that the teacher offered the child a candy bar with peanuts in order to sicken the child enough that he wouldn’t go on a field trip. The teacher was allegedly afraid that the child would likely misbehave on the trip:

The mother of an 8-year-old autistic boy with severe peanut allergies said Friday that an Indianapolis teacher gave her son a peanut-filled candy bar in hopes of making him sick so he wouldn’t go on a field trip.

A lawsuit filed by the boy’s mother, Anita Young, alleges that special education teacher Trinda Barocas told a classroom aide that the boy would likely misbehave and “maybe he could be sick enough not to attend and we won’t have to deal with it.” Young said her son, Jacob, who is mostly nonverbal, gets hives and experiences swelling if he merely touches peanuts.

The child is a picky eater and didn’t recognize the candy, so he didn’t eat it.

The parent found out when classroom aides brought it to her attention:

Officials at Mary Bryan Elementary School in Indianapolis contacted Young in March after classroom aides reported that Barocas mistreated the boy, who was 7 at the time, and another child.

The teacher is no longer employed at the school.

Specialist People: looking to find 1 million jobs for autistics

1 Apr

ABC News has a story that caught my eye: Software Company Only Hires People who Have Autism. The company, Specialisterne, is a Danish company that is looking to capitalize on the strengths of autistics in the workplace.

On the name of the company:

The company name ‘SPECIALISTERNE’ is a danish word for ‘The Specialists’ and alludes to that we are the opposite of ‘Generalists’. Our strength is in the details where our employees have a special skill for immersing themselves in their work.

We use the company name internationally though the term ‘specialister’ is phrased differently in different languages.

In the graphics of the company name the I’s are highlighted with the colour of the Dandelion flower.

and the idea behind the company:

Thorkil Sonne’s son was given the diagnosis “infantile autism with normal intelligence” at age 3. This gave Thorkil the chance to get to know a fascinating and vulnerable handicap world.

Thorkil has been behind many of the initiatives in the area of autism and was president of the local chapter of Autism Denmark in the West Zealand County for three years.

Thorkil got to know many adolescents and adults with autism spectrum disorders (ASD) – and he wondered why these intelligent young people couldn’t use their energy and skills in the business community, doing what they do best and yearn to do.

Thorkil concluded that out welfare system works best if you have a visible handicap – but lacks much in experience and knowledge when it comes to handling invisible handicaps like ASD.

There was obviously a shortage of job opportunities where people with ASD can meet understanding and support and through that get the opportunity to use their special skills. Thorkil didn’t see enough opportunities within the existing system.

After 15 years in the world of tele-communications Thorkil knew the value of the skills he saw in young people with ASD.
Thanks to the support of his family Thorkil was able to start SPECIALISTERNE based on a loan on their house and his family’s belief in his vision.

If I can get the embed code for the video on the ABC News site, I’ll post it here.

Specialisterne has expanded to the UK, with a website SpecialstPeople.com and a plan to create 60 jobs in Glasgow. This was discussed on the BBC website last year. A video is on the Specialst People website.

An example of where I disagree with Rodney Peete

1 Apr

Rodney Peete is the husband of Holly Robinson Peete and the father of two autistic kids. Mrs. Peete recently wrote a blog post on the Huffington Post that was fairly reasonable. It was also promoting her family’s upcoming books.

Mr. Peete has a book out, Not My Boy, and there is an excerpt at the Today Show’s website as

Facing the trauma of autism diagnosis
Former NFLer Rodney Peete writes about his son’s condition

The choice of the title, “Not My Boy”, is not one I would make. The picture on the cover makes it clear that he is not saying, “This child is not my boy”, but I’d still have picked something different.

The excerpt on the Today Show’s website has a section about vaccines. Too bad. I bet there are big sections of the book that don’t dwell on vaccines at all. Mr. Peete isn’t as bad as, say, Jenny McCarthy in terms of quantity of misinformation and his approach is better. He is still not well informed. As in, “The symptoms of mercury poisoning look an awful lot like what children with autism suffer”.

For the record, autism is not at all like mercury poisoning. I’d suggest people who want to explore this idea talk to toxicologists, people who have experience with those who have mercury poisoning. DAN doctors (who don’t treat actual cases of mercury poisoning and have little or no training in toxicology), actors and football players are not my first line for medical advice.

That said, I probably would have skipped discussing this if that was all. A title that’s, well, not so great. Information that’s, well, not so great. One line I read, though, sticks in my mind. This one line is why I am writing this. Keeping it in context for the moment, in talking about the early years with his son before the autism diagnosis, Mr. Peete writes:

We asked our pediatrician what was happening with R.J., and he acted as though what we described was no big deal. He reminded us that boys develop differently than girls. Growing up isn’t a straight line, he said. He’d catch up just like Ryan had pretty much caught up with him physically.

I see now that we were willing to accept this because he was telling us what we wanted to hear. There was nothing wrong with R.J. He was just going through a phase, a temporary setback that he’d recover from before he started school in the fall. We were overjoyed when we found out that Ryan and R.J. had been accepted into our top choice for preschool. The teachers there were well trained and compassionate, and we expected that they would help R.J. learn more social skills and encourage him to make friends.

I thought that trying to keep up with the other kids would be a huge motivation for R.J. to snap out of whatever phase he was going through. Maybe once he was around the other kids he’d start to do what they did. That would help with speaking too, I thought. If R.J. really was a member of the Robinson-Peete family, there wasn’t anything that could have prevented him from talking. Our pediatrician confirmed everything I had hoped about how getting R.J. out into the world would be a way to break his isolation.

And here is the statement out of that that bothers me:

If R.J. really was a member of the Robinson-Peete family, there wasn’t anything that could have prevented him from talking.

I’m certain I have written and said things I don’t want my kid to hear or read someday. I believe the above statement is supposed to tell us Mr. Peete’s feelings at that time and his opinion has evolved. It probably reads well to other pro sports players. But, assuming his thoughts have evolved, I wish Mr. Peete had made that evolution more clear.

I just can’t imagine thinking, “if my kid were really a member of the family…” for a kid that young. I guess if an older kid (or adult) is doing things that are harming others, yeah, sure, not part of the family.

I thought that sitting for a few hours to think it over would result in the line making sense and I wouldn’t be writing this. I was wrong.

Urge the GMC to strike off Andrew Wakefield

31 Mar

On April 7th, the GMC reconvene to decide what is to be done with Andrew Wakefield.

You can play a part in helping to make sure that the GMC know the feelings – the anger – of the true autism and autistic community and by urging them to strike Wakefield off.

We all know how Wakefield has lied, grabbed money, attempted to conceal his role in murky dealings and covered up results that he knew would counteract his ‘science’. He still holds sway over a few hardcore antivax/autism believers and for his continued lying to them and relying on their belief alone he deserves to be struck off. His abuse of their inability to understand science is shameful.

Please email Kate Emmerson, the GMC solicitor concerned on KateDOTEmmersonATffwDOTcom stating how you feel about Andrew Wakefield and urging the GMC to strike him off.

White House Remains Steadfast In Support Of Disability Council Nominee

30 Mar

Disability Scoop has a new article about the nomination of Ari Ne’eman to the National Council on Disability.

Mr. Ne’eman’s appointment has been on hold in the Senate, as noted in a New York Times article and on this blog (and others).

“We are still behind Mr. Ne’eman and hope for a quick confirmation,” a senior White House official told Disability Scoop on Monday.

The appointment has the support of multiple disability advocacy groups. Again, from Disability Scoop:

Nonetheless, more than a dozen disability advocacy groups including the Autism Society of America, Easter Seals, Special Olympics and the American Association of People with Disabilities have expressed support for Ne’eman’s appointment.

Ari Ne’eman’s appointment to the National Council on Disability on hold

28 Mar

In a piece in the New York Times, Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism, Amy Harmon discusses Ari Ne’eman and his nomination to the National Council on Disability (NCD).

Mr. Ne’eman’s name was submitted by the White House as part of a group of nominees to the NCD. His nomination is to succeed Robert Davila, whose term has expired. Mr. Ne’eman’s nomination was “ordered to be reported favorably” by the Senate HELP committee on March 10th and sent to the full senate. At present, the nomination is on hold.

Mr. Ne’eman is an autistic adult. If his nomination is confirmed he will be the first autistic to serve on the NCD. He is probably best known his efforts with the Autistic Self Advocacy Network (ASAN), which he founded. ASAN seeks to advance rights of autistcs as reflected in its mission statement:

The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement in the world of autism. Drawing on the principles of the cross-disability community on issues such as inclusive education, community living supports and others, ASAN seeks to organize the community of Autistic adults and youth to have our voices heard in the national conversation about us. In addition, ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!

I will repeat for emphasis: “ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens”.

I find that a position difficult to argue with. Who wouldn’t support access, rights and opportunities for autistics?

This mission statement is fully in line with the purpose of the National Council on Disability, which also promotes rights and opportunity:

The purpose of NCD is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.

As the parent of an autistic child with very significant disabilities, I can say without reservation we need groups working on improving the rights and access and opportunities of autistics. I believe Mr. Ne’eman and the National Council on Disability would be an excellent match.

In her piece in the Times, Ms. Harmon notes that it is unclear who put the hold on the nomination and what the reason may be. Senate rules allow for a single senator to place a hold, anonymously, for any reason (including just plain obstructionism):

Mr. Obama’s seven other nominees to the council were confirmed this month. But parliamentary procedure in the Senate allows one or more members to prevent a motion from reaching the floor for a vote by placing an anonymous hold on the action, which an official with knowledge of the proceedings said had been done in Mr. Ne’eman’s case.

The Senate has been rather obstructionist in approving many Obama administration appointments, leading the President to employ recess appointments in order to get some of his nominees into jobs. Recess appointments are not the sort of action the President takes lightly, indicating the level of obstructionism in place.

Mr. Ne’eman’s nomination to the NCD generated some discussion within the online autism communities when it was announced. For many people this centered on a question of whether Mr. Ne’eman viewed autism as a disability. Many went so far as to outright claim that he does not see autism as a disability. It would seem clear that Mr. Ne’eman views autism as a disability merely from ASAN’s mission statement which places ASAN as a disability rights organization. For those who remained unsure, Mr. Ne’eman answered this claim quite clearly in a recent piece he wrote for Disabilty Studies Quarterly:

It should be stressed: none of this is meant to deny the very real fact that autism is a disability. It is only to point out that disability is as much a social as a medical phenomenon and that the “cure” approach is not the best way forward for securing people’s quality of life.

Mr. Ne’eman and ASAN have been very active in united efforts by multiple disability groups, such as the recent request for an investigation into the methods employed by the Judge Rotenberg Center (which includes electric shocks and seclusion). One thing lacking in most autism organizations, in my view, is the recognition of our place within a larger disability community. Mr. Ne’eman’s track record of collaborations within this broader community is another sign that he would be an excellent candidate for the NCD.

The Times article concludes with:

But the split among autism advocates, suggests Lee Grossman, director of the Autism Society of America, may simply reflect the unmet needs of a growing population, for both research into potential treatments and for programs to support jobs and independent living.

“We have this community out there frustrated and bewildered and reaching out for any assistance, and that makes us battle-hardened,” Mr. Grossman said. “We need to reframe the discussion. From our perspective, it’s great to have a person on the spectrum being nominated to this committee.”

I agree with Mr. Grossman that this is a great thing to have an autistic nominated to the NCD. As I’ve already pointed out, Mr. Ne’eman’s goals fit those of the NCD quite well.

One notable piece of irony in this story is that the organizations which are critical of Mr. Ne’eman’s nomination have no positions held by autistics. The notable exception is Autism Speaks, which only recently added an adult autistic (John Elder Robinson) to an advisory position. As an additional irony, it is very likely that Mr. Ne’eman’s own advocacy efforts were partly responsible for Autism Speaks giving a position to an adult autistic.

Autism represents a “spectrum” of disabilities. All to often, Mr. Ne’eman’s efforts are framed as being part of some divide between the “high functioning” and “low functioning” ends of the spectrum.

The New York Times piece noted this in this section:

But that viewpoint [neurodiversity], critics say, represents only those on the autism spectrum who at least have basic communication skills and are able to care of themselves.

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t,” said Jonathan Shestack, a co-founder of the advocacy group Autism Speaks, whose mission is to help finance research to find a cure.

Neurodiversity certainly does not represent only “high functioning” autistics as its critics would imply. I will not speak for Mr. Ne’eman nor ASAN, but from my own perspective. First, neurodiversity is not limited to autism. Second, within autism, neurodiversity does not apply only to the “high functioning” autistics. In my opinion, the neurodiveristy “viewpoint” is one that stresses rights for all, regardless of the level of “functioning” or presence or lack of any neurological “disorders”.

There are those who try to downplay Mr. Ne’eman’s disability. Keep in mind, we are talking about a man who spent part of his education in a segregated special education program. The fact that he was able to self advocate his way out of this program is to his credit.

For the record, my perspective is that of the parent of a young child with multiple disabilities including very significant challenges due to autism. I would argue that it is precisely children like my own who most need other people to fight to protect their rights. It is from that perspective that I welcome the nomination of Mr. Ne’eman and look forward to his confirmation in the full senate.

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