Aspies For Freedom

Questioning Conventional Wisdom again . . .

(This time about the “autism epidemic.”)

As many of you are probably aware, the “autism epidemic” has been in the news during the last couple of weeks. NBC News has devoted the most broadcast coverage. The Chairman/CEO of NBC Universal (Bob Wright) has a grandson with autism; and his wife is prominently featured in Newsweek's cover story of autism. ABC News, and other TV news outlets are on the bandwagon, too. (As a side note, February is one of the “sweeps” months, when TV viewership is measured in order to establish advertising rates, so the networks attempt to hook as many viewers to prove they have the largest audiences. They don't lightly choose what to put on TV during this time; it's a very calculated decision.)

When reading the story in Newsweek (which arrived in my mailbox on February 23rd), I was surprised to read that the Centers for Disease Control and Prevention is launching a “$2.5 million autism-awareness campaign, 'Learn the Signs. Act Early.'” One ABC News report on February 21st focused on autism and other developmental disabilities. In this ABC report, as well as others on on TV and in magazines, experts and news reporters alike inform viewers of the importance of early intervention and warn of the dangers of not getting a diagnosis and treatment as early as possible, all owing to the “plasticity” of the brain during the earliest years (more about this in a moment).

There are a some troubling issues about all this. One is the apparent coincidence of the incredible amount of media attention at this time, coupled with CDC's announcement. I once worked in the media; I know how long it takes to prepare in-depth stories and campaigns. So none of this is actually coincidental; this is obviously a well-coordinated effort among government and the media. And while getting accurate information into the public domain is important, this current effort also runs the risk of increasing the so-called autism epidemic: many doctors, parents, educators, and others will now be hypervigilent and may “see” autism whether it's really there or not. (While many fervently believe there truly is an epidemic others cautiously warn that the increase in cases of autism could also be related to a widening of the diagnostic parameters and other issues. But that's another story.) We may be in the midst of an autism-hysteria, and I'm not sure where this might take us. More segregation and special programs? More devaluing of children because they have a disability?

I'm also troubled by the angle of most of the stories: the focus, in general, has been on the feelings of parents and family members. Parents and grandparents speak of “indescribable pain, frustration, sadness, grief, feelings of loss” and more. News stories detail all the “treatments” parents are putting their children through: diet, behavior programming, therapies, medications of all kinds, swimming with dolphins, and much more. But what about the feelings of the children or adults who have autism? Many adults with disabilities have painfully told me about their treatment-filled childhoods, and added, “I wish my parents could have loved me just the way I am.” So I wonder if many children with autism are feeling “indescribable pain, frustration, sadness, grief, and feelings of loss,” not because they have autism, but because of the way they're being treated! Shouldn't we care? Throughout this extensive coverage, I've seen only one story about an adult with autism (in Newsweek). And she talks about how her world changed when she was able to begin communicating through a keyboard. Yet there are still thousands of young children with autism who are denied this opportunity, based on “expert” advice that if a child is given an alternative form of communication, he'll “never learn to talk.” So children who are “locked up in autism” may be there because we've thrown away the key (to communication). During my presentations in this area, I ask parents, “Would you rather have your two-or three-year old child say, 'I love you' with a communication device or not at all?”  You probably know how they answer.

At the risk of igniting a firestorm of controversy, I hope others will join me in questioning conventional wisdom. If you've heard me deliver a presentation, read the articles on my website, and/or read my Disability is Natural book, you probably know that I'm all for ensuring children and adults receive whatever supports, assistance, assistive technology, or anything else they need to be successful. And I'm absolutely in favor of doing whatever it takes to ensure every child and adult with a disability is included in their schools, communities, workplaces, and any other environment, so they can lead Real Lives! I am wary, however, of those parts of today's conventional wisdom that:

- result in the segregation of children or adults with disabilities;
- make people with disabilities/families dependent on the service system or professionals;
- cause children and adults with disabilities to believe they're “not-okay” and/or “need to be fixed;” or
- are based on an “expert opinion” which is taken as “fact.”

In 1988, when my son was very young, a physical therapist told me, “If children with cerebral palsy don't learn to sit independently by age two, they never will.” There was, according to her, a “window of opportunity” that would be lost forever. At the time, I didn't know to ask questions like, “How do you know? Do you have research to back this up?” But even though I asked no questions, I didn't believe her statement—I didn't think anyone could know this with certainty. (I think it's healthy to live with a little bit of skepticism and do a lot of wondering.)

So now it's 2005, and based on all the latest news coverage about autism and other developmental disabilities, “experts” are still warning us about the absolute necessity of early diagnosis and early treatment in order not to “lose the window of opportunity.”

For a little over two decades, many in our society have embraced the belief that the brain has the greatest “plasticity” during the earliest years of life. It's an idea that's been heavily promoted in many quarters, based on “new brain science.” Most likely, it's this belief that caused the physical therapist to make her announcement about children with cerebral palsy sitting independently by age two or never. And there's a good chance it's this same belief (coupled with others) that leads today's experts to warn us about the “critical” need for early diagnosis, intervention, and treatment.

But there are opinions and research from other respected voices that offer a different perspective. The Myth of the First Three Years: A New Understanding of Early Brain Development and Lifelong Learning, by John T. Bruer, Ph.D., debunks the “new brain science” and “plasticity” theories promoted during the past 25 or so years. On the back cover of Bruer's book, Howard Gardner, author of Frames of Mind: The Theory of Multiple Intelligences, writes: “[Bruer's] careful discussion and eminently sensible conclusions should shame those who propose grandiose policies or issue dire warnings on the basis of scanty or ambiguous data.”

Deconstructing Early Childhood Education: Social Justice and Revolution by Gaile Sloan Cannella is another book that offers a different and valuable perspective. Author David Elkind also questions the “earlier the better” paradigm in Miseducation: Preschoolers at Risk. And finally, perhaps we can use our own common sense to realize that all people are different and that learning is a life-long process. And if we think particularly about formal education (which we now inflict on many very young children via some special programs and interventions), look back on your own life: have you learned more in formal education settings or during common experiences of everyday life?

There's more to what we've been told about early intervention than meets the eye, and I hope parents and others who are concerned about very young children (with and without disabilities) will read these and similar books in order to have a more balanced view. As I've already mentioned, I'm all for ensuring children receive the supports and assistance they need. I also believe this can be achieved without all the direct interventions and special (segregated) placements which are usually recommended. I believe parents have great wisdom and are their children's first, and best, teachers. To that end, parents can use professionals (therapists and others) as consultants. These consultants can educate parents; preschool teachers at typical, inclusive preschools; day care providers; and others, on how to support children and meet their needs in the most natural ways possible and in natural environments. Segregated settings are dangerous, for a variety of reasons. Many parents of children with autism are learning, the hard way, that putting their child with autism in a class of other children with autism results in their child learning how to have “more autism.” (Yes, children in such settings probably do learn and progress in some positive ways, but I believe, based on real-life experiences, that children can make just as much progress or more in inclusive settings with the right supports and accommodations.)

The great British writer Agatha Christie once wrote, “More children suffer from interference than from non-interference.” Early intervention can often border on interference when services and treatments disrupt the natural, healthy, and important experiences of young children and their families. Many parents have painfully described how hours and hours of daily therapies for their children with autism have created chaos in their families; and now they're saying no to this interference.  I hope parents who do not buy into conventional wisdom about autism treatments will raise their voices to the media and elsewhere to educate the public about the other side of the story. There are families of children with autism who love, accept, and support their children just the way they are. They help their children become successful without resorting to potentially-harmful and demeaning interventions. (Dee Blose, author of one of this month's Revolutionary Common Sense articles, is one of them.)


I also hope professionals, parents, and others who do believe in extensive interventions for children with autism would learn from adults with autism—they are the true experts. Visit some of their websites and learn.

- At http://www.autistics.org scroll down to the bottom of the page and see how they feel about the Cure Autism Now effort.
- Go to http://www.sentex.net/~nexus23 and click on "No Autistics Allowed" to learn what adults with autism think about some of the “treatments” recommended, especially regarding “behavior.” A variety of other info about autism---from different perspectives---is available here.
- At http://home.att.net/~ascaris1/attacking-autistics.html you'll see another thought-provoking article.
- The focus on http://www.scn.org/people/autistics/relationships.html is “Autism, Dating, and Socialization.”

While I don't always agree with the language used on these sites (I prefer People First Language), I certainly respect and value the wisdom and experiences of these adults with autism.

In my personal life, the people who have taught me the most were adults with cerebral palsy, because that's the diagnosis my son has. These adults have “been there, done that.” They have helped me be a better parent and helped me focus on what's really important. And, of course, my own son has been one of my greatest teachers, too. He's another “real expert.” I hope that all of us who do not have disabilities will learn from those who do.


Written by Kathie Snow: http://www.disabilityisnatural.com/email/2005-02.htm

Speaking about questioning conventional wisdom and their "make-believe epidemic" I just read an article from Rolling Stone.com about the vaccine scare and a big "cover-up of mercury/autism connection" which can be read at this link:  

[url] http://www.rollingstone.com/politics/sto...ayer=false
[/url]

I would have printed this article but it is way too long to post.  It is all about thimerosal being injected into kids and causing autism.  While I won't say that thimerosal is not poison, I KNOW it is not the cause of autism.  Autism runs through my family genes and has been present through many, many generations (we just never knew what to call it before).  

Robert F. Kennedy Jr. investigates the government cover-up, as he calls it.  This coming from one of the Kennedy's, the family that lobotomized a family member simply because she was unruly and stepped "out of line" one time too many.

The bottom line to me is this; A certain group of people want Autism to be declaired an epidemic.  If Autistics are considered diseased, is it possible that they can institutionalize, sterilize (lobotomize) and abort future autistics all in the name of controlling "the disease"?  

This really makes me so paranoid because it just wasn't that long ago when they "put away" large groups of children considered "genetically inferior"  - just in the early 1900's this happened!  

[url] http://cbs2chicago.com/rooney/sixtyminut...94814.html [/url]

If you want to figure out why there haven't been too many cases of autism until now, just remember this....they used to institutionalize people for "being different" so they really didn't have much of a chance to have families.  

They didn't extinguish us then and we have to strongly stand together now to keep them from trying to eliminate us again.

Does anyone else feel this way?  If so, don't give up sending letters/emails to government officials, newspapers and pro-cure groups and speaking up for the true Autistic Community.  

They Demand a Cure.  We Demand Freedom

Yes, Lili Marlene, you are very correct.  It is so hard for me to think of Starting a group by myself.  I have been to meetings of Autistic groups before but many seem set up for the parents and not really geared for autistic adults with autistics (themselves) as group leaders.  

So now comes my big question(s).  Have any of you started groups in your area?  If so, how did you arange these meetings.  Did you post something on the board at your local library?  Did you organize at your school?  What type of a flyer would you post for such gatherings?  Something like..."Does this sound like you?" - with a list of known autistic traits.   I'm better at meeting online than I am in person but if I have to organize something myself, I will do it.  I just stress out so easily and have spent the last few years trying to avoid any situations that may cause meltdowns.  This is a course of action that is important, though.  Any suggestions, Lili Marlene?

Yes, I too have seen a few distrustful, depressed and embittered adult and senior aspies.   It really tears at me to think that they are possibly going through life with no one to help them, even if "help" is just having someone to talk them through a rough point in their life.  

I have been through a few tough times myself and wouldn't wish some of the stuff I went through on anyone.  I know in the area where I live, many homeless people will come into the library to read (and sometimes to clean up a little or nap) and so this is why I thought of the library as a place to post a flyer/poster.

I've got a theory that quite a few of the homeless are possibly autistic.  I understand it is hard to maintain bills, housing and employment (because it is difficult for me) and some of these few may have fell on hard times.  

I don't know if I'm altogether excited about (socially) getting together with other people but I think it would be good to get together at least to support each other in some way, possibly once a month or so.   I am doing fairly well on my own and so maybe I could be a shoulder to lean on occasionally, or someone to talk to (when things seem too hard to handle alone).  All I know is I want to do more than I'm doing at this time and so starting an AFF group or one that is open to AS and other autistic variations sounds like the necessary path to take.  Now, my only problem is setting aside a bit of time to do this  :?

Autism families with a high incidence of alcoholism.
Miles JH, Takahashi TN, Haber A, Hadden L.

Division of Medical Genetics, University of Missouri Hospitals and Clinics, #1 Hospital Drive, Columbia, MO 65212, USA. milesjh@missouri.edu

To determine the significance of neuropsychiatric disorders in autism families, we analyzed 167 pedigrees ascertained through an autistic child; 39% had alcoholism in patterns consistent with transmission of a genetic trait. Children from high alcoholism families were more likely to have the onset of their autistic behavior occur with a loss of language (52.5% vs. 35.8%, p = 0.04). This occurred primarily in families where the mother was alcoholic (80% vs. 40%, p = 0.05), suggesting an association between maternal alcoholism and regressive onset autism. Children from high alcoholism families were less likely to be macrocephalic (14.7% vs. 40.6%, p = 0.0006). Children from high alcohol and low alcohol families did not differ in dysmorphology status, IQ, sex ratio or sib recurrence risk.

PMID: 12959419 [PubMed - indexed for MEDLINE]

And related to the above:


Dev Med Child Neurol. 1997 Sep;39(9):583-7. Related Articles, Links  


Attention deficits and autistic spectrum problems in children exposed to alcohol during gestation: a follow-up study.Aronson M, Hagberg B, Gillberg C.

Department of Pediatrics, Sahlgren University Hospital, Goteborg, Sweden.

Children born to mothers who had abused alcohol throughout pregnancy had severe behavioural and intellectual problems which remained at age 11 to 14 years. Of 24 children examined, 10 had attention deficit hyperactivity disorder (ADHD) with or without developmental coordination disorder, two had Asperger syndrome, and one had an autistic-like condition not meeting the criteria for Asperger syndrome. Six of these 24 attended special schools for the mentally *** and a further 11 were given special education, leaving only seven attending regular schools without any type of support. The children had difficulties in mathematics, logical conclusions, visual perception, spatial relations, short-term memory, and attention. Sixteen children lived in foster homes. There was a clear correlation between the occurrence and severity of the neuropsychiatric disorder and the degree of alcohol exposure in utero.

Publication Types:
Clinical Trial

PMID: 9344050 [PubMed - indexed for MEDLINE]

I make no claim for these studies one way or the other Lili, which as you observe have small sample sizes - I posted them merely to illustrate my point that autism and alcohol dependence can be found together, and can interact detrimentally - and that such a view was not merely a subjective impression based on my own very limited experience of the world, but was a view held by others.

Stella

Lili Marlene,  I'm not sure what the statistics are on homeless autistic people but I know a few myself that have fell on hard times and were temporarily homeless.  I don't believe becoming  homeless was something they forsaw happening.  These folks did not have a drug or alcohol problem they just had a hard time maintaining employment and keeping bills straight.  I'm not sure if they were Asperger though, so maybe that was the difference.   I wouldn't know if they needed sympathy or not.  I'm really not one that is able to give sympathy (not really sure what good it would do even if I understood how to give someone sympathy) so that isn't an option with me.  
I do know that talk does help, though.  I know this because I have a cell phone that is open for at least three autistic people to call at ANYTIME they feel stressed out on their job, or when they are out in public or anytime they are overwhelmed, they know they can call me and we talk, and believe it or not, it is helpful.  I listen to whatever is bothering them at any point during the day (I talk to these three people at least two or three times each a day but usually for just a short time - say 10 minutes or so) if they need my feedback, I give it to them and if I need them I know I can call them.  One of these people get horribly stressed when writing out bills or calling the utility companies, I do this for them or check with them each week to see if they need my help.  So this is the type of thing I mean when I say I can be a "shoulder to lean on."  I think it would be a good idea for autistics (with whatever functioning abilities they have) to create a network or group that connects with each other and yes, that provides support much in the same way a family would (or should).

Kathie, my dad thought I had classical autism when I was a baby as I used to have a very long attention span and was very interested in particular things eg. there were a lot of moths on our walls during the summer and I had to point at each one and say "moth" even if there were dozens of them.

However, back then he wouldn't have known of Aspergers, and soon thought I was okay as I learned to speak very early (about 15 months)
I don't think there would have been any particular interventions then and I am glad I didn't have to go through them anyway.

The time that diagnosis would have been beneficial was when I was a teenager and the social deficits were becoming very apparent. I think smaller children are a bit more tolerant of differences than older children.
I was bullied from about 5 years of age, but think it was mostly because I was small for my age and cried if I was teased.

I took to biting kids who tormented me which didn't endear me to the teachers - they automatically assumed I was in the wrong and one even bit me which I think was child abuse but then in those days, maybe nobody really worried about it.

Sometimes I feel bitter about the lost opportunities and the bullying which has continued even up to the present, but perhaps it could have been worse. Mum says when I get the bitter and depressed moods that my "monsters are rising to the surface". These "monsters" lurk in the back of my mind and are not always consciously apparent to me but when things go wrong they come back.

They are images of people saying and doing nasty things and I wish I could get rid of them for keeps.

I agree with the comment that more help is needed towards advocacy services for adults with autism and parents of children with autism. I think autistic people are often considered easy targets for scams and ill-treatment such as bullying at work and they may not realise what remedies are available to them.

Presently, I go to an autism support group in Townsville Australia, but it is mostly geared for parents. However, the lady in charge has an autistic daughter a few years younger than me and we've been helping each other with information and moral support. A really nice young man with AS joined up last year and I am trying to get an adult support and social group going but due to my executive dysfunctions, it's been a bit hard to start up but we'll eventually get there, I'm sure.

Brightman, I think you have got it exactly right. I also think that any programmes aiming to reduce alcoholism, attempted suicide and drug use need to consider why people start doing these things in the first place.

Men in our society are not generally encouraged to cry so may turn to alcohol to "drown their sorrows". Women are discouraged from showing anger so the frustration builds up and may lead to self-damaging behaviours.

That vulnerable people are tipped 'over the edge' by the very 'professionals' who are supposed to be 'helping' them?

The frustration, lack of access to services - waiting lits of nearly a year - and then you're likely to get a misdiagnosis.

Then there's the lack of practical support services because aspies fall beteen all the safety nets.  

- Not physically disabled, so no support forthcoming from social services.

- Not quite 'mentally ill' either, so denied help and support from mental health agencies.  Unless, of course, the lack of advocacy services, help and support have led to clinical depression or another mental health problem, in which case you just get 'sucked into the system' and they 'treat' the superficial symptoms, they don't address the underlying cause, i.e. that the problems have arisen because they haven't provided help, advice and support re AS.

Cause

Effect

Confusion Of.