jason: jason (Default)

Being both Autistic and an educator, I’m very interested in how our educational institutions are structured to inure children to accept the heteronomy of adult run institutions. I know that if children are given autonomy to do whatever they want that disaster will ensue, but I also know that we do not help children learn to be as autonomous as they safely can be. As John Locke said, children should be kept safe, well cared for and safe from hurting others, but beyond that they should be left to their own devices, and given nothing. They should find their own way until they choose to come to adults… only then should we engage them. Otherwise we are inculcating them with our own goals, values and dreams, and replacing what is their intrinsic interest with a worldview based on performance for adult approval. By the time they end up at university, it is too late to refind the intrinsic interest that is what they need to become fully actualized individuals.

Being confronted with the notion of Childism (Childism is the subordination of children’s needs/interests for the benefit of adults, even if adults think it benefits children.) is a very inconvenient notion for parents and educators. The whole notion of the institutionalization of lived experience that is reflected in our schools, hospitals and social services represents the organization of our own adult lives according to externalities. Yet, we ostensibly have a say in this matter. Children do not. We all decide for them, and by the time they are in a position to have a say they have been operantly conditioned to comply.

More on this later. Just a thought I wanted to get down.

Mirrored from Lemmingworks.

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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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Spanking Kids in School Still Common, Especially Among Disabled | The Autism News

a new study by the ACLU and Human Rights Watch, as reported here and here. More than 200,000 U.S. schoolchildren were subjected to corporal punishment during the 2006-2007 school year, the study shows. And the South has a big lead in whacking schoolkids, with Texas, Mississippi and Alabama holding the top three spots.Paddlings in school are still legal in 20 states, and the report suggests they are quite common, based on 202 interviews with parents, teachers, students and school officials, plus federal Education Department data. The courts haven’t afforded students in classrooms the same protection as criminals have against cruel and unusual punishment.Many pediatricians now advise against corporal punishment; some research suggests spanking makes behavior problems worse. And while I admit to having harbored now and then a fleeting wish that my kids’ teachers could smack fellow students whose behavior disrupted class, I never would seriously advocate such a thing.In the saddest finding of the ACLU study, children with disabilities, especially autism, drew corporal punishment at a far higher rate than others, the study found. Children with autism were often punished for behaviors linked to the condition, because teachers lacked the knowledge, training or patience to use other methods of behavior control.

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Mirrored from Lemmingworks.

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How do autistic children survive as adults?

Families complain there is not enough support and a postcode lottery syndrome for sufferers of autistic-spectrum disorder….

Peter Griffin is 29, he has an IQ of 159, a degree in astrophysics, and a gallows humour about his Asperger’s syndrome, an autistic-spectrum disorder that makes social interaction so difficult that his longest — indeed his only — stretch of paid work has been a Saturday job in Tesco, which he has had since he was 16. He is so wired after his shift that he is awake until 4am and it takes him the rest of the week to recover: “At the end of a day trying to be ‘normal’, acting the part, wearing the mask and reining myself in, I’m like a pressure cooker.”

I wonder what would have happened if I’d not HAD to leave the house and go out on my own. Perhaps for most folks it just leads to more anxiety, and certainly didn’t generate any confidence, but it did generate capacity, and less of a worrying about the future. It would be great to start running workshops for ASD adults with the hope of designing spaces that would help them engage in a comfortable manner. Or better yet, force everyone else to do the reverse? Hee hee

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Mirrored from Lemmingworks.

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Judge Sentences Alabama Woman To Death For Murder Of Autistic Son – WHNT

Judge Dempsey also wrote in his sentencing order, “To intentionally murder your child by burning him is shockingly evil.”

During the trial, the state presented evidence that Mason, who was autistic, had a total of $175,000 worth of life insurance when he died. Christie Scott took out a $100,000 policy the day before her son died. Someone had also removed expensive jewelry and pictures from the home. Investigators also found an undamaged smoke detector in the ashes. It was believed to have been taken down before the fire.

Defense attorney Robert Tuten argued the fire was accidental and there was no proof Scott set the fire. Franklin County District Attorney Joey Rushing contended Scott set the fire to collect her son’s life insurance money and to relieve herself of the burden of caring for an autistic child. Rushing pushed for the death penalty.

“To me, the fact that she chose that manner of death for a child that was scared of fire puts her in a category that not only is possible for death, it definitely deserves the death penalty,” says Rushing….

In their verdict, jurors found Scott guilty of three counts of capital murder:
Capital murder for pecuniary/monetary gain
Capital murder committed during first-degree arson
Capital murder of a person younger than 14 years of age

I just don’t know what to say. Here it is autism related, but other times you hear about it being about family honour. I don’t support the death penalty myself, and I can’t say that I support it here. Selfish criminal homicidal stupidity that allows you to not see someone as human and worthy of life… that’s what strikes me. And the ability of people to see people who are different as non-human is what astounds me, and it is something that I think is both learned and repairable over time. Not with her… but societally. That’s what is motivating me about notions of inclusive education.

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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)
Autism Ready is a new family resource site by a colleague of mine at Ryerson University... also named Jason. It is interesting to see someone's new site, since people often don't do that sort of thing any more. I like to see things in process, under development, not fully polished. I like it especially when the content itself is growing, as it does with their son and family's exploration of autism.
jason: jason (Default)

Originally published at Lemmingworks. You can comment here or there.

Mind Hacks: Girls with autism talks about “Autism - Mental Health and Disorders - Brain Development - Genetics - Girls - New York Times
What Autistic Girls Are Made Of” with

some of the latest research on girls with autism, but also has some wonderful illustrations of how girls with autism experience the complex world of social interaction

As I’ve said before, I’m very curious about how adults and older children reflect on their experience with autism as a personal way of learning about how it must be in a child’s life.

October 2013

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