Aspies For Freedom

OK

just got to ask. What incident out of the all the others in the past like it caused you  to write about it?

Considering I was at one point 'low functioning', I see no reason why I can't help. They want to understand their children and I study autism a lot. Most adults treat me with respect and enjoy my company. I agree to disagree with some people, but the majority are respectful and listen even if they don't agree all the time.

you know , thinking about parents. When I was there with them and spoke, they never really listen to come think of it anyway.


   You know as well that the parent group of power here on Long Island is AHA/AS/PDD . They ARE the advocates for high functioning individuals.  See their website
http://www.lightlink.com/schissel/aap/index.html

They SUPPORT AND SPONSOR NAAR!!!!

And the head of that group pat schissel provides the monthly meeting place for grasp on LI therefore she is at EVERY meeting monitoring.  No other NT / parent is permitted there more than 2 times.

Here is the personal reflections of bernice polinsky who is a member of aha/as/pdd and a friend of wright the chairman of NBC. (he is doing a week of the epidemic of autism week next month)
this is at the website of aha/as/pdd
==============================================
Late Diagnosis & Transition Issues


If the goal of education is to produce a functioning, productive member of society, New York State Education Department (NYSED) has failed many, and continues to fail many, individuals with HFA/AS/PDD (High Functioning Autism, Asperger's Syndrome and Pervasive Developmental Disorders) and their families.

When the full spectrum of all these disorders is included the statistics would be staggering. Tony Attwood, Ph.D. and John Pomeroy, M.D. state that the incidence is 1 in 250. HFA/AS/PDD may be medically different, but are educationally the same, which is vitally important because the treatment for Autism Spectrum Disorders (ASD) is education - appropriate education, and "education" is not a synonym for "academics".

Lack of access to services from VESID (Vocational and Educational Services for Independence for Disabled) has an enormous negative impact on the quality of life experienced by these students, adults and their families. Because many of the students labeled with higher functioning autism spectrum disorders may seem to have less educational needs, their lack of functional, vocational and daily living skills are overlooked and they will fail in life. This is VESID's responsibility. NYSED has the power to change that.

My son Michael is 28 years old. He lives at home and falls within the high functioning range of autism.

Although we knew at age 2 1/2 that Michael had a speech problem, our pediatrician told us to wait until he was 4. "He might outgrow this stage and improve" was the philosophy in those days. At 4 he was diagnosed with LD (learning disability) and then the archaic term of MBD (minimal brain damage) at the North Shore Hospital Children's Diagnostic Center where he received speech/language therapy for a short period of time.

What he really needed was intensive language therapy but we didn't know that then.

North SHore recommended a BOCES (Board of Cooperative Educational Services) placement, which he attended for kindergarten and 1/2 of First Grade. He had picked up a great deal and was too academically capable to remain there.

It didn't take long for the teacher in his regular first grade to pick up on his social and language difficulties. The school did their own evaluation, classified him as learning disabled and placed him in a self-contained class.

He was misdiagnosed, misclassified, misunderstood, miseducated, and mistreated throughout school. Because of this he fell through the cracks of standard special education strategies although there was alot of attention directed towards him.

His IEP (Individual Education Plan) twice, said he had "some autistic symptoms". When we asked about that we were discouraged from using the term autism. Throughout school we were told by his private Psychologist as well as the Director of Special Education, "Why do you want to label him? Labels will just hold him back and place him in BOCES, which would have been inappropriate for him. We were discouraged from ever appropriately classifying him, labeling him and getting him the help he needed.

By Fifth Grade he was fully mainstreamed with Resource Room. Yet he struggled. He never learned the skills that he needed, to be fully mainstreamed. He was lacking in many of the needed skills for doing higher-level academics e.g., research, writing a term paper etc. In addition he lacked Executive Function. Which means, difficulty engaging in planning activities, problems with organizational skills, impulsivity, preservation, lack of future orientation (transition problems) difficulty with self-monitoring, both in terms of accuracy and progress toward a goal.

His disability not only impacted on academics, it impacted on his whole life, for e.g. social skills-he had no formal help with this. He does not get social clues-this is part of his disability.

Secondary School was often a nightmare for him. He still can't forget the bullying, teasing, kicking etc.

He has some paranoia. This may be because he doesn't know if people like him. He wants to be liked. He has trouble reading facial expressions. Again part of the disorder so he can't tell. Off and on he has suffered from periods of depression, loneliness, anxiety, anger, agitation and mood swings. He has trouble shifting to relaxation methods when he's stressed.

We were not well served by many of the professionals. I recall the attitude of a resource teacher who told me, "You do too much for him". We didn't realize that he was a visual learner, that he would learn better if things were broken down in steps for him. We will never know if modern day early intervention would have helped him with his academics, social skills and language.

Academically he struggled through and he graduated at 18 totally unprepared for the next step. His transition plan was useless. It didn't prepare him for life after high school.

Professionals saw him as college material. So he's smart, so what!!!

Let him grow up; send him to an "out of town college" (they assumed that this was a solution, little did they know). Our gut feeling was that they were wrong but to satisfy everyone we checked out a few colleges in CT and Mass.

When we took a look at the kind of students that were walking around on campus it was so obvious to us that he would never fit in and it would never be the right thing for him. He simply didn't have the skills; he had inadequate independent living skills, social skills and academic skills to be independent.

Transitioning from High School to a local college was enough of a change and challenge for him.

He was accepted at Dowling College in the LD program where he had a tutor twice weekly. In some ways college was a holding pattern for Mike till we found out what he could do next. He did understand some of the academics but he really didn't have the skills for college.

He drove himself to college, a part-time job, and jiu-jitsu 2 times weekly. He continued jiu-jitsu until 4 years ago when he was 24. He had no friends or social life of his own.

At age 19 it was realized that he wasn't accomplishing the needed independence or learning academic skills. There were missing pieces. He was thought to be ADD (Attention Deficit Disorder) but after a diagnosis by Dr. John Pomeroy of Stony Brook we found out to our surprise that he indeed had autism, HFA. He had many of the symptoms, was more able in many areas but needing so much help with social skills, interactive language etc.

This was the beginning of a new awareness for him, for us... It was such a relief to understand ...why. We were now sure that it wasn't our or his fault.

Eventually Mike came around to accepting his diagnosis and finally having an explanation for why he was the way he was. He knew for the first time that he was not alone, he met others who had similar diagnoses. We looked for opportunities to bring him together with others so he knew he was not alone and he could have others to identify with.

He was very fortunate to obtain a job but a few years later we approached VESID to get a job coach. We saw the value of the support and structure that he needed on the job site.

The job coach is needed to customize the environment so he can work with people and so he's not isolated and in his own space.

VESID is extremely important to someone with HFA/AS/PDD. VESID has the ability to support, change and improve their quality of life.

VESID

    * needs to provide trained job coaches
    * use visuals, written or pictures with job procedures and sequence
    * break jobs down into small steps depending on the individual
    * create sensitivity for other employees and employers

VESID needs to provide daily living skills such as:

    * money management
    * budgeting
    * time management
    * travel training and/or transportation, which is affordable. (Transportation was an issue for our Mike. He needed a sense of independence and ability to get around by himself. Public Transportation was more than a mile away; therefore he needed to drive to get to all of his activities.)



All of this is still happening today, much of the Education community and VESID does not fully comprehend their role with regard to AHA/AS/PDD clients.

Sadly, we are reminded that the reality is that these facts are not isolated. Families are so overburdened, particularly families of individuals with autism spectrum disorders over 21. If they don't have a job or go on to school after high school they are at home and usually completely isolated from the outside world. Their immediate family is often their only contact. They may sleep to all hours of the day or watch TV all day. The lack of structure and activities may lead to anxiety, depression, anger or agitation.

When Mike stays home he is bored, lonely, restless and hasnUt enough structure. I try to provide some but I'm just his mother and he needs more contacts.

It wasn't until the passing of NYS CARES that we were able to find people to spend time with him. Sadly, the only people in his "circle of friends" are people that are paid. Mike's been designated to be in a group home with similar people. He needs to move out to be have a life of his own, a chance to grow as an adult, an opportunity to be more independent. We look forward to seeing him begin a fulfilling adult life sometime in early spring 2001. Not to complain... and we are so grateful, but it's through our enormous efforts that we reached this goal.

Everyone deserves to have a life that is fulfilling, he has the capacity to have one, and his disability could be compensated for with housing and good supports.

We want our kids to move along the continuum, we don't expect a cure.

This story is being unnecessarily repeated over and over today.

Bernice Polinsky
Albany - January 2001
Advocates for High Functioning Autism, Asperger's Syndrome
and other Pervasive Developmental Disorders

I find this to be sad. This mother has injected her son full of self limiting beliefs.  Who said he could learn and grow into the environment???

He is most likely more capable today than he was 10 years ago. He might have been able to achieve more if he allowed to stuggle and strive beyond his current perceived limitations.

I too was struck by the kaleidoscope of agencies and acronyms to which this young person was subjected.

Stella

Uschi,

I've  never been able to learn how to tell left from right with any degree of certainty for more than a few minutes at a time, though I do have certain "tricks"  for sorting them out, which I must consciously perform on each and every occasion to choose correctly e.g. I write with my left hand. This is the hand that I write with. Therefore this is the left hand side. Difficulties start to emerge when I turn to face the other direction and my left hand is now on my right....  please please don't try to explain it to me, anyone, because I will end up having to pretend to underdstand to make you stop explaining it to me.

My mental processses have numerous glitches of this sort which I have never been able to debug despite their apparent simplicity.  My inability to solve even very simple puzzles often surprises people who assume that my mental abilities are all as strong as my command of written English.  My IQ is about 70.

I have never found out how to make friends in the "normal" way, though the internet has helped me to meet and maintain for the first time in my my life two friendships which I wouldn't otherwsie have had.  Even so I still spend more than 95% of my time on my own, which is a very lonely and bleak experience year in year out. ,

My experience to date suggests that most of those who look to us as the basis of their career and occupation do little more than invent new vocabulary to mark their passage through our lives. Once we were called "patients" and now we are called "clients".  Once we were called "sub-normal" but now we are "differently abled".  Changing the lexicon creates the illusion of progress for them and us.

I have not been able to succeed on my own, and now live in what is called "semi-sheltered" accomodation. I have lived entirely on my own devices for some longish periods in my life, which resulted in my homelessness on two occasions.

When I was a child it seems it was immediately obvious to everyone that I was autistic, as my echolalia,  perseveration and tantrums quickly got on people's nerves.

But somehow I've  survived and am here telling you my story. We don't have things easy here.

Stella  :roll:

after a diagnosis by Dr. John Pomeroy of Stony Brook we found out to our surprise that he indeed had autism, HFA....... It was such a relief to understand ...why. We were now sure that it wasn't our or his fault.

This passage starkly illustrates the social role of the Disease Model of Autism.

It removes responsibility and the sense of moral guilt from parental upbringing and the family generally and  re-locates it outside the home with wretched quangos like VESID and BOCES.  

Looking through the statements made about "Mike" - that he can drive a car, attend ju-jitsu twice a week, do a part-time job and attend a college, its hard to imagine him being diagnosed with very much in the United Kingdom. Perhaps the urge to diagnosis is proportionate to parents' expectations of the way their child should perform,  so that middle-class, educated, ambitious parents are more likely to look for pathology in offspring who don't look like "the chip off the old block" they'd hoped for.

Stella

Ms Tea asks:

Does it strike anyone else that all these reports in newspapers and magazines are a self fulfilling prophecy that's only getting us nowhere fast?

The fact that the subject is being raised in the media at all is proof of the outstanding efforts of a very small number of people to get our point across.

Militant and separatist tendencies  form a necessary evolutionary step in the development of identity politics, as we have seen with the evolution of lesbian, gay,  trans, and black identities.  What has worked for them will work for us too.

Stella

Then we should be attacking those ideas, not the parents themselves.  Our enemies are the stereotype-spouting psychologists who declare themselves to be autism experts, the pharmaceutical companies, the ABA providers, the autism research scientists, and the small number of "Uncle Tom" autistics who knowingly collaborate in spreading harmful misinformation for profit.

Well-meaning but misguided parents are not the enemy; they're victims of the autism industry as well, and we need to try to get as many of them as possible on our side.  I believe that there is a substantial "silent majority" of parents who would support us if they knew more about our goals, but right now they're confused and ignorant.  We need to show respect for their legitimate concerns about their children's well-being, even when we don't agree with their conclusions.

I thought the mother's article made a reasonable effort to avoid AS stereotypes in describing her personal view of her son's needs.  Some young people need more help than others, and without knowing more about the family, we really can't judge whether or not the mother made the correct decisions.

My parents took the opposite view and sent me away to college when I was 16, believing that I would learn how to take care of myself by doing it.  I managed to muddle through fairly well, and I believe that I'm mentally healthier and stronger than if I had been kept sheltered at home, but not everyone can do that successfully.  I've known some young aspies who couldn't deal with the stress of going away to college and who attempted suicide, or got pregnant and dropped out, or became addicted to drugs.  Parents need to make decisions based on their knowledge of their child (this applies to NT kids too; some of them are too immature to go away to college or have self-destructive habits).

It sounds like it must be very corrosive to your peace of mind.      You mentioned somewhere else that you and Ken had agreed to see a marriage counselor, but (if you don't mind my making a suggestion) I think it would also be helpful for you to have separate sessions with another counselor, to discuss your feelings of being helpless and trapped.  It's not unusual for dependent wives with marital problems to feel that way (whether they're AS or NT) and a good counselor could probably help you to feel more in control of your life.

Stella, regarding your discussion with Uschi about IQ tests, I completely agree with her that they're garbage, and you shouldn't take the results at all seriously.  My impression of you (based on the content of your posts, not just your writing ability) is that you have a very analytical, intelligent, and original mind.

Whoever labeled you as having subnormal intelligence ought to be flogged!

Stella I have to agree wholeheartedly!!!!  Your posts about declaring ourselves  a minority based on our DIFFERENCES rather SAMENESS , and how that was a radical departure from the past was awe inspiring. It was aha moment for me. There is so much more to be said on this too. But those posts were inspired.

I think the first people to get involved with any new civil rights movement have always felt overwhelmed by the huge task ahead of them and have wondered if they were really going to be able to accomplish anything useful.

Don't lose heart.  We're on the right side of history.  

We are not against therapy to help anyone.   It lenny schafer and sabrina freeman and kit weintraub and their ilk who make this personable. They distort what we stand for. And  now, they make ad homenem attacks calling us liars.  I am truly beginning to believe that they are suffering from undiagnosed mental illness from the ferocity and nonesense fo their attacks