jason: jason (Default)

I was reading Ragga’s post Why Parents of Autistic Kids Get Judged and What to Do About It and I had some thoughts. I’ve not blogged in over 12 months, but I’m really getting into studying sensory integration disorders and Melanie and I are writing a book chapter on autistic semiotics.

In response to her post, I said the following:

I’m a verbal autistic adult, with out children. The general problem of parents’ expectations of having a normal child, and to further normalize a child’s behaviour is the issue. Parents of autistic children may resort to normalizing therapies, and often see the successes of those therapies as a victory. I’m sure that my parents find it something of a victory that I can pass as neurotypical at a glance, and have been able to hold down some employment. Obviously parents of children on the spectrum are more understanding of the child when they act inappropriately, but I wonder how many parents are comfortable not hoping for neurotypical behaviour. I would say that the expectations are ubiquitous, and need to be challenged or accepted. But I don’t find it shocking that an adult who is not aware of the difference the child has would look at the parent as being at fault.

I would like to wear a tshirt saying “I’m autistic… what’s your problem?” or “Fight Neurotypicality” though with a smile. I’m not angry, but I am NOT shocked at how parents normalize and have normalizing expectations. That’s what a parent is all about.

BTW, your kids look cute. I have pictures of myself with those same, to me, autistic questioning look.

to which she responded

Thank you Jason. Your points are very insightful. …perhaps as to be expected given that you have autism yourself and already been through what many autistic kids are going through right now. I am very thankful for your input as I believe that we parents of autistic kids should listen to autistic adults the most as you know exactly what you are talking about. Sure, every individual with autism is different and autism comes out in many different ways but… there are still some common denominators and you have the insight that others can never achieve – as much as we try.

I have never thought of the angle that you suggest; that we (parents of kids with ASD) are simply too expectant ourselves. Like you say, we do not have the same expectations towards our kids as maybe parents of neurotypical children but perhaps our expectations are still too high despite of that. I have to admit that I do indeed hope that my boys manage to learn the things that people are expected to learn, both through school and in society. …it’s just, you somehow always imagine that everyone want’s to be as normal as possible, including your children, or in other words (as normal sounds kind of negative in this context) that they would themselves want to fit in. Perhaps I’m wrong…?

To which I then said:

Normal is not only a socially constructed fiction that is most convenient for market driven cultures of the post industrial revolution era, but it is unnatural and in the end bad for the species.

I’m not normal. I have 4 degrees, a PhD, teach at a university and run a well funded research lab. I think lots of people would like to be non-normal like me. I also am a high school drop out who didn’t learn to write properly until his 30s, and never had a full time job until his 40s. Some people would not like to be that kind of non-normal.

“Overall the average American, age 25 or older, made roughly $32,000 per year, does not have a college degree, has been, is, or will be married as well as divorced at least once during his or her lifetime, lives in his or her own home in a suburban setting, and holds a white-collar office job”

Parents are deluding themselves if that is their ‘goal’ for their children.

The notion “I just want my kids to be normal” seems to me to be a hope that children won’t be singled out, bullied or marginalized by their peers. Wishful thinking if you look at the statistics relating to bullying and abuse.

Feminist thinking broke the mould in terms of what we thought was ‘normal’ in the workplace and the professions a century ago. The queer community has broken the mould in the civilized world for what is accepted as a meaningful relationship, etc. That means we don’t see the world from a black/white perspective that puts the white, protestant christian, university educated male as the model of what is good and normal. We see the world as a continuum, from left to right, male/female, the whole queer continuum from the hetro-normative male father of the family of the religious right to the same-sex two-spirited parents brining up children in a community context. And somewhere there is a trajectory/continuum for the autistic on an arc that intersects these continuum at some point.

I am NOT an expert on autism. I have read much of the literature and thought about it a lot over the past years, and incorporated it with my lived experience. I look at autism as from the social disability model, meaning that we are disabled by a society that is not inclusive to people who are different, and expects medical model normalcy. I have no time for normal (as described above) nor the economic model is supports.

I’m starting to work from the model that we have to engage children who are autistic in finding out the strategies to reduce their stress and discomfort, and frustrations with themselves and their environments. We’re trying to develop tools for sensory play to help autistics and people who are interested how and why to explore sensory information as a way to reduce stress in the autistic individual. In the end, autism IS a sensory integration disorder. I think that solving the problem with how we engage with and share sensory information will go a long way to finding our place on the continuum of human experience, which in the end is what we want for ourselves and others.

All the people I know on the spectrum are particularly sensitive to disruption, and when they lack the freedom and autonomy to deal with disruption in the way they prefer, overloads are inevitable. And I feel that dealing with the issue of sensory integration is beyond all other things both the direction to allow an individual to engage with others most fully and the key to happiness.

To which she replied:

Wow, you should write your own blog – seriously – I think a lot of people would like to read what you have to say. So many great points. Thank you.

I embarrassedly acknowledged that I have a blog, and this one goes back to 2001. I lost the earlier stuff. I should be obviously doing what she suggest, and blogging more. I think I’ll blog more on… autism.

Mirrored from Lemmingworks.

jason: jason (Default)

Over 60 Disability Organizations Condemn Autism Speaks–Hollywood should follow their lead

The Autistic Self Advocacy Network Release this Press Release and Protest Advisory.  The Final Letter to Autism Speaks is in the previous blog post.  Celebrities and Actors should show their support of the disability community and condemn Autism Speaks.  If you are an actor or celebrity and agree, please contact me so we can show you how to let them know that this is not acceptable

Perhaps “autism speaks” has done a good thing by mobilizing the Autism community to take back their identity from aspects of the neurotypical community that want to control it. My sympathy and support goes out to parents who are struggling with children, but that doesn’t forever give them control over the situation.

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Mirrored from Lemmingworks.

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If this video does anything, it makes the autistic child look like a lost victim of a plague that wasn’t caught in time, the parents failures for not ‘catching it in time’ and the autistic community a group of pariahs. It uses scare tactics and I feel veiled threats that feel to me more like a marketing campaign than a personal expression of the creators (the spin that I’ve read AS has put on this). Sure. Express yourself… your anger and pain as a parent… but don’t post it on “Autism Speaks” because if you’re not on the autistic spectrum, you aren’t speaking as part of the broad diversity of autistics… you’re speaking as a parent of autistic children (according to AS), and your voice shouting loud, full of fear and negativity, merely silences us, victimizes us in the eyes of society, marginalizes our potential contribution to society, and creates a culture that can seek to further exclude us for our difference. Watch the video… do you want the child, as portrayed, playing with your children? That child is portrayed as tainted.

Autism Speaks presents us as puzzles and broken children… not the puzzle solving remarkable individuals history suggests we are.

Groups Outraged Over Video Released By Autism Speaks

A group of leading disability organizations is calling on Autism Speaks’ benefactors to end their support for the organization. The move comes in response to a video distributed by Autism Speaks which critics say depicts people with autism as less than human and burdens on society.

The video, which aired at Autism Speaks’ World Focus on Autism event earlier this week in New York, features two parts.

The first part shows young people with autism as a voice-over declares, “I am autism.” The man’s voice continues by describing autism as a disorder that works “faster than pediatric AIDS, cancer and diabetes combined,” will ensure that your marriage fails, will bankrupt you, cause you not to sleep and make it “virtually impossible” to go out in public without experiencing embarrassment or pain.

The second portion of the video features more hopeful images. The voice-overs declare that through love for their children, parents and others will work tirelessly to overcome the challenges autism presents.

In response, disability advocates are now coming together to condemn the video, which they say is part of a pattern of behavior by the nation’s largest autism advocacy organization.

In a letter being prepared for open circulation next week, the group of advocates say the video is a “fundraising tool” that relies on “fear, stigma, misinformation and prejudice against autistic people.” The letter will be sent to Autism Speaks donors, sponsors and supporters and it will be posted publicly, organizers say.

Already the American Association of People with Disabilities, ADAPT and TASH are among the organizations that have signed on to the letter organized by the Autistic Self-Advocacy Network. Other organizations are now reviewing the document….

The group of advocates go on to ask the public to no longer support Autism Speaks and instead find new ways to support people with autism and other disabilities.

“Autism Speaks believes that its bottom line will be helped by portraying autistic people as less than human,” says Ari Ne’eman, president of the Autistic Self-Advocacy Network. “This is really damaging if you’re trying to get your child included in school or if you’re an autistic person trying to find a job or get included in society more broadly.”

When asked about the video, Autism Speaks representatives tried to distance the organization from the short film, which appears on the group’s Web site and includes home videos solicited through the organization….

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Mirrored from Lemmingworks.

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Oh, I wish I could have gone to the new College for autistics at Cal. State University. Of course this flies in the face of inclusive education, but there is a time and place for everything. If this is a research experiment that will help understand how differently Auties and Aspies need to be educated, it will bode well for understanding how higher education needs to grow if it is to have any hope of being inclusive AND getting the best for our society from and for all our members. What a neat idea! Eh?

Much of the growing literature on autistics focuses on their limitations and disabilities: the socially awkward behaviors, the large gaps in cognition and conceptualization, the self-stimulating behavior like spinning or rocking and self-talking.

But it is also true that many students with autism possess academic skills more advanced than many students in computation, observation and documentation. They often bring a different way of looking at the world and a singular creativity. Can these skills and insights be harnessed in ways that allow the students with autism to succeed in college and in the larger world and work world? This question is central to the experiment about to begin in Hayward.

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Mirrored from Lemmingworks.

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H1N1 and other flu viruses linked to autism, schizophrenia | The Autism News

Dr. Hossein Fatemi has been testing the H1N1 virus and its impact on fetal development for over 10 years. His findings provide an important link between viral infections in pregnant women and profound mental disease in their offspring.

The H1N1 swine flu that has been making headlines is but one species in an infamous H1N1 lineage that has circulated among human populations since 1917 – and the H1N1 lineage is one branch of numerous flu virus species. While flu viruses present themselves through the physical respiratory symptoms we have long associated with them, it is now apparent that their impact is more dangerous and profound than we had understood prior.

I spoke with Dr. Hossein Fatemi, Professor of Psychiatry, Pharmacology and Neuroscience at the University of Minnesota Medical School. Dr. Fatemi has been studying the link between H1N1 specifically and autism and schizophrenia since 1998. His work has centered on mice, but the lessons learned certainly translate to human populations.

In the 1990s, there was evidence that pregnant mothers who had been infected by the flu had given birth to children with schizophrenia.

“We asked a simple question,” Dr. Fatemi said. “If we infect pregnant mice at various gestations with H1N1, does it cause abnormalities in the offspring’s brain development. The experiment looked at the impact of H1N1 infection on brain genes in the hippocampus and in the cerebellum.”

The findings were staggering and pointed to a direct connection between flu infection and the onset of autism, schizophrenia, and other gray and white matter afflictions.

“A large number of brain genes were affected significantly in both the hippocampus and cerebellum,” said Dr. Fatemi.

Autism has been on the rise – and this has been an unexplained phenomenon. A number of studies have looked at mercury levels in vaccination dosages, but Dr. Fatemi’s look at flu infection may offer a broader understanding of how psychological disorders may be emerging from viral sources.

“Some cases of autism may be a consequence of these natural infections,” Dr. Fatemi said.

Now that’s interesting. If this is the case, perhaps we can engineer specific flu viruses as genetic engineering tools :) Just joking but it is an interesting point. What are viruses but information vectors.

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Mirrored from Lemmingworks.

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Teenager convinces airline bosses that he is an aviation tycoon | The Autism News

The police will not be taking action against the teenager, who is reported to suffer from a form of autism and to be able to recall the exact detail of every airline’s flight schedule.

Gotta love that. Never would have occurred to me to try to pull that off in a million years.

Mirrored from Lemmingworks.

jason: jason (Default)

Challenging popular myths about autism | The Autism News
Myth #1: All autistic people are nonverbal and low functioning.
Myth #2: Autism is a mental illness.
Myth #3: Autistic people lack empathy.
Myth #4: Autistic people are antisocial.
Myth #5: Autistic people don’t make eye contact because they don’t care about what people have to say.
Myth #6: Autistic people can’t have families of their own.
Myth #7: Autistic people are puzzles with pieces missing.
Myth #8: Autistic people have low intelligence.
Myth #9: Autistic people do not enjoy life.
Myth #10: Autism is a disease in need of a cure.

Mirrored from Lemmingworks.

jason: jason (Default)

I found this on the Wrong Planet website: Missing Qld boy rides bike to Sydney

A 15-year-old Brisbane boy with Asperger’s syndrome who went missing for two weeks has been found in Sydney, after riding his bike more than 950km down the Pacific Highway….

He had as good a reason as any for the epic journey down the east coast on one of Australia’s busiest highways - because he thought he could.

“I just wanted to see if I could get down to Sydney on a bike and how long it was going to take,” Ethan told the Nine Network’s A Current Affair program on Wednesday.

Ethan said he had planned the adventure since November last year and made no apology for failing to call his mum to let her know he was okay.

“At the time, I didn’t want her to know where I was,” he smiled.

His mother, Tammy Johnson, said they had to keep putting a little bit of money in his keycard account each day so that he could continue to eat, but not enough so that he could get further away.

He was last captured on closed circuit television about 9.20am (AEST) on March 30, leaving the Robina train station on the Gold Coast.

“Because we had the CCTV footage, we knew he was safe and the fact that he kept using his keycard as he went along we knew where to find him when he hit Sydney,” she told AAP.

Based on the discussion, it seems that this is a typical aspie thing to do. :)

jason: jason (Default)

Doctors failing to spot Asperger’s in girls, warns expert

And this is an interesting interview with autism expert tony attwood: Key Learnings of Autism Thought Leaders

jason: jason (Default)

I guess I’ll get it next year.

United Nations Secretary-General Ban Ki-moon: To Enable Children and Persons with Autism to Lead Full and Meaningful Lives is Not a Far-Off Dream


VIENNA, 2 April (UN Information Service) - By designating 2 April as World Autism Awareness Day, the United Nations General Assembly has helped to galvanize international efforts to promote greater understanding about autism. This year’s observance is being marked with lectures, briefings, screenings, musical performances, video conferences, art installations and other activities carried out by the UN family and a full constellation of partners.

I welcome this growing international chorus of voices calling for action to enable children and persons with autism to lead full and meaningful lives. This is not a far-off dream; it is a reality that can be attained by promoting positive perceptions about autism as well as a greater social understanding of this growing challenge.

I have seen what caring people who work tirelessly for this goal can achieve. Last year, the United Nations hosted a rock concert by Rudely Interrupted, whose members have various disabilities, including on the autism spectrum. They brought the audience to its feet with warm, communicative songs and showed, through the sheer joy of their performance, how much people with disabilities can offer the world.

The words of lead singer Rory Burnside were especially inspiring. “My advice”, he said, “to kids who have some form of disability is: don’t let it stop you. Use it as your strength; don’t use it as your weakness. One red light can lead to a whole bunch of green lights, with a few orange lights thrown in. And the red lights are just a bit of a test. There are definitely more green and orange”.

On World Autism Awareness Day, let us capture and share this spirit, and let us intensify global efforts to ensure that children and persons with autism everywhere can benefit from the supportive environment they need to reach their full potential and contribute to society.

jason: jason (Default)

Autism in Economics? A Second Opinion

A popular claim among critics is that economic science is suffering from autism, a severe developmental disorder characterised by impairments in social relations and communication, combined with rigid and repetitive behaviour. So far, this allegation has not been substantiated. This essay explores the claim of autism in economics based on modern schemes of diagnostics. A key finding is that the structure of the critique against mainstream economics bears a striking resemblance to the structure of the diagnostic criteria for autism. Based on an examination of three groups of key symptoms, I conclude that the required set of criteria for the autism diagnosis are not met. However, there are parallels which may serve as constructive reminders for the future development and application of economic theories and models.

Buridan sent me this quaint little abstract. I could see how some people might find it offensive, but in the context that northern europeans are reported to have a very different attitude towards autism spectrum disorders. If autism isn’t a disease, but a normalcy that our abnormal world can’t handle, then taking up the topic this way, doesn’t have the expected negative connotations it would otherwise have. Will have to read this.

jason: jason (Default)

Ann Bauer on autism, violence | Salon Life

The monster inside my son
For years I thought of his autism as beautiful and mysterious. But when he turned unspeakably violent, I had to question everything I knew.

By Ann Bauer

I scan the story while standing, my coffee forgotten. Trudy Steuernagel, a faculty member in political science at Kent State, has been murdered and her 18-year-old son, Sky, has been arrested and charged with the crime, though he is profoundly disabled and can neither speak nor understand. Sky, who likes cartoons and chicken nuggets, apparently lost control and beat his mother into a coma. He was sitting in jail when she died.

This happens to be two days after my older son’s 21st birthday, which we marked behind two sets of locked steel doors. I’m exhausted and hopeless and vaguely hung over because Andrew, who has autism, also has evolved from sweet, dreamy boy to something like a golem: bitter, rampaging, full of rage. It happened no matter how fiercely I loved him or how many therapies I employed.

Now, reading about this Ohio mother, there is a moment of slithering nausea and panic followed immediately by a sense of guilty relief.

I am not alone.

This is a profoundly disturbing story. I feel great sympathy for anyone who is a victim of family violence. That’s a given. But this is not an article about family violence. It is an article about autism. And that people with autism become dangerous, and should be locked up. Others say that people with Autism should be subject to therapies that will render them more social, sometimes even recommending electric shocks.

And people wonder why I never got myself assessed when I was a teen? Well, I had a wise teacher named Michael who took me aside and counseled me that it would be better to work on trying to pass as neurotypical than… well, I won’t go into that now. Anyway, it was a success, and through choosing my education very carefully, and being lucky enough to have good mentors, I am where I am.

I feel that, and I’m no expert, that the attempts to normalize people with autism is a ticking time bomb that will explode one way or another. Why wouldn’t that happen when you disrupt the way someone wants to interact with the world and ‘train’ them to model appropriate practice? The best way to cause someone to explode is to wrap them up tight, put them under stress and give them no way to release that pressure. Voila.

The notion that it would be better to have cancer rather than autism is particularly sad to hear, and personally threatening. I can see what Michael was saying when he said don’t get an assessment… that it is worse than cancer. My brother died of cancer. Died in my arms. And we did bone marrow transplants and lots of blood products sharing. So I know what that’s like.

The conclusions of the article are compassionate, “Our adult son’s behavior could be the outcome of living daily in a world where everything hurts and nothing makes sense.” and “Autism does not always equal violence. But I do believe there may be a tragic, blameless relationship.”

So the over all sense of the article is that people who are autistic must be watched for signs… whereas I wonder if there isn’t a relationship between how neurotypical people treat people with autism and violence. If you want to push someone over the edge, and need advice, perhaps the people to ask are those trying to normalize autistic individuals so that they can fit in.

jason: jason (Default)

http://news.bbc.co.uk/2/hi/health/7966770.stm

Watching how a toddler responds to animations could help diagnose autism, research has suggested.
Babies usually start paying attention to movement soon after birth, and pick up information from the cues they see but children with autism often do not.
A study, published in Nature, where two-year-olds were shown manipulated animations found those with autism focussed on movement linked to sound.

jason: jason (Default)

Mind Hacks: The cognitive neuroscience of eye contact

The latest Trends in Cognitive Sciences has a fantastic review article on the cognitive neuroscience of eye contact, demonstrating how this fleeting social connection has a powerful impact on the mind and brain.

Past research has shown that making eye contact has an impact on social perception and subsequent behaviour….

Children with autism have been found to show radically different patterns of eye contact recognition and gaze direction, and the authors suggest that one cause could be a problem with the these eye contact neural circuits which leads to slow or impaired social understanding.

jason: jason (Default)

U.S. Court Finds No Link Between Vaccines, Autism

A special federal court ruled yesterday that vaccines do not cause autism and that thousands of families with autistic children are not entitled to compensation, delivering a major blow to an international movement that has tried for years to link childhood immunizations with the devastating disorder. [Parents have been] misled by physicians who are guilty, in my view, of gross medical misjudgment.

I guess parents want to blame someone/thing. I’ve heard theories of toxins in the GI system causing ASDs, and that may be observable. But people, you need a mechanism not a conspiracy. It would be cheaper to fix a problem and pay off the victims than to have an increase of ASDs in society.

Anyway, I feel sorry for parents with children who require constant care. Worse for children who may be wrapped up in a world they can’t deal with, but let’s fine real solutions and improvements, not blame and quick fixes.

October 2013

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