While society has a centuries-long tradition of providing public school until adulthood, and the IDEA law -- passed over 25 years ago -- specifically requires that people with disabilities receive a "free appropriate education", I don't think there is as much tradition or federal law requiring services for adults.  At least California has the Lanterman Act, passed over 30 years ago, which "establishes an entitlement to services and supports for persons with developmental disabilities, those at risk of developing a developmental disability, and their families".  (But with our budget problems, we may soon see drastic service cuts.)  I'm not sure what other states have.

BTW, I like Barbara Fischkin's letter at that same NYT page linked to in the first sentence of the above article:

To the Editor:

I have a 21-year-old son with autism. I just spoke at the Autism One Conference in Chicago, about “Biomedical Interventions for Older Children.” My son’s doctor, Michael Elice, presented as well and reminded parents that it is “never too late” to try to ameliorate the symptoms of autism.

By following the “Defeat Autism Now” protocols — and this doctor’s advice — we have been able to help our son control his concentration, behavior and stomach problems. He is not cured. But we will keep trying.

As the children of the current autism epidemic grow older, it is crucial to understand that age should not be a deterrent to interventions.

Barbara Fischkin
Chicago, May 25, 2009

"Why not try to do more to make such a huge transition---from school to (hopefully) employment and no longer living with one's parents---less wrenching and traumatic and even........easier?"

Don't forget the thousands of adults who are too old for transition programs, but still need services.

@Kristina. "Why not try to do more to make such a huge transition---from school to (hopefully) employment and no longer living with one's parents---less wrenching and traumatic and even........easier"?

I totally agree with you.

"Discussions about services and supports have a way of falling into "camps" and "us vs. them" push-and-pulls".
It might be true that adults and children are falling into camps.

Having a brother not in the system for 36 years:

1. It was about the government spending money for a lifetime of help. No one is responsible for payment. Several professionals made that clear to me.

2. It was about his refusal to use government services such as PRIDE Industries. This was a problem when things were difficult in his life too and he had trouble taking care of himself without wanting family assistance. It is hard to be developmentally delayed, difficulty getting a job, making unintentinal bad choices, and functioning with normal adults.

3. It was about IDEA being required by law as a complete, supported safety net. Adult services were fragmented and difficult to locate. You have to apply to each and go through waiting lists. There is no system in place for adult care. No one is responsible or held accountable.

4. It was about higher expectations for children who could still improve and lower expectations for adults who are done growing.  At the community homes I worked at this was the expressed thoughts of the staff.

5. It was about the adult person having lower expectations for themselves. As they aged they saw themselves struggling in a fast pace world, losing their dreams and having less opportunities.

There is a huge distinction between services for children and services for adults though, and I don't think that pretending it doesn't exist will get rid of it.

Services for children are, and generally ought to be, controlled by the children's parents.

Services for adults ought to be controlled by the adult in question.  I am saying this fully aware that there are adults whose communication styles are so unusual that parents feel like they have to continue to be in control of their lives.  But I have never actually met the proverbial adult with no communication, and I think that even in instances where the person does not speak or write, every effort ought to be made to figure out what their responses mean (and to work out a system of communication that works for them) and let them guide the services more than the input of family members does.

I also think that institutions, whether large ones, small group homes, or tyrannical "community support" agencies that behave in institutional ways while claiming to support people in their own homes, need to be completely abolished from the concept of "adult services".  Too often what I see parents looking for is a setting that is institutional in nature, whether they call it that or not, and whether they know that's what it is or not (given that there's a myth floating around that institutions are defined by the shape of the building or number of people living in it).  And I see people believing that is the only option -- or only option for people with a certain level of support needs -- even in places where it is the least common option.

But I do really think that the distinction between children's services and adult services exists because there are extreme underlying differences between these services and most of the issues surrounding them.  And because the power struggles do in fact exist.  It's a natural extension of the distinction between child and adult life in non-disabled people.  Pretending this distinction doesn't exist, or shouldn't be there, won't make the underlying issues go away, and I don't think it will make things any easier in the long run.

The distinction between the two areas of support is artificial because the variance in support required between two adults in the spectrum can be as wide as that between an adult and a child in the spectrum. It is artificial because there can be no expectation that simply by having aged symptoms will be alleviated. 

"This study(England) will inform the development of a national strategy designed to ensure that adults with autism and Asperger's syndrome are supported to have full lives." (See below).
Department Of Health Announces Adult Autism Srategy, UK 
http://www.medicalnewstoday.com/articles/106812.php

@Amanda. ""Too often what I see parents looking for is a setting that is institutional in nature, whether they call it that or not, and whether they know that's what it is or not."

 I think there are many people who feel the same as you.

 For the parents we feel abandon because there is no system in place for adult services. IDEA required schools(k-12) to pay for and provide a safety net of services, plus the child got to leave the house and go to school. But after high school parents can't find services, housing. Adult programs are unsupported by the government.  Parents are looking for answers and options. You could help us find the best way to do things.
 "If you think education is expensive, try ignorance" Derek Bok quotes (American Educator and Lawyer

My 50's year old brother lives with my 86 year old mom. She can't take care of his needs and she doesn't drive. Their state has no programs. So my brother sits at home. None of my brothers and sister will take him. Believe it or not Nobody knows what to do.

Here is something families should be asking our country to do:

"(England) Care services Minister Ivan Lewis announced £500,000 for Government research into the numbers of adults with autism and their specific transitions needs. This prevalence study will inform the first ever Government strategy on adults with autism and Asperger's syndrome, due to be published next year....

Part of the new research will focus on the period of transition to adult life and will inform service planning for adults with Autistic Spectrum Disorders (ASDs). This will be led by Prof. Baird and it will examine the lessons and challenges in the transition process and focus on areas such as mental health, social care, housing and further education needs.

"Adults with autism and Asperger's syndrome are too often abandoned by services with their families left to struggle alone. Equally, people are frequently missaprorpriately referred to either mental health or learning disability services

"This study will inform the development of a national strategy designed to ensure that adults with autism and Asperger's syndrome are supported to have full lives."

"We still don't know enough about autism, but we do know that left unsupported, it can have a devastating impact on those who have the condition and their families. One of the key gaps in our knowledge is simple - we don't know how many people have the condition in any given area. That is why I am ordering a study to address this. "

-- The transitions research will focus on young peoples' experiences, including their mental health needs, their social care and housing needs, further education needs, opportunities for leisure and access to transport, and the ease of access to services. Transition planning was highlighted in the Children and Maternities National Service Framework and we wish to identify good practice as well as barriers experienced in accessing provision.

-- For both parts of this research, the teams to bring together a number of researchers and practitioners who are highly eminent in the field of autism and who have already made a substantial contribution to our understanding and treatment of individuals with Autism Spectrum Disorders (ASDs).

I totally agree with you that institutions need to be abolished. I have worked in them and instead of looking at the individual needs of each person, people have to follow the institution's rules. It is a dehumanizing experience. I can tell you from experience to never live in any place that has more than 50 people. With less than 50 residents there is more personalize care- care tailored to each individual.

I thought it might be helpful to look at an agency like Easter Seals and their services for different age groups. Adults need housing, jobs, etc if this is possible. Children need identification, early intervention if desired, inclusion. So I think there is a difference between adult and youth services and it varies on what specific thing you are looking at and comparing.

Services for Young Children (Preschool)
Learn about the early childhood services Easter Seals provides including our network of inclusive child care, early intervention and other social integration and play based programs.

Services for School Aged Children and Youth
Easter Seals partners with families and school systems to offer a wide variety of services for school aged children and youth. Services include Applied Behavior Analysis, social integration, outpatient therapy and school to work transition program.

Services for Adults (Click on link and find out about Easter Seals adult services)
Through therapy, job training, residential and social integration services Easter Seals provides independence options many adults with Autism never thought possible. Discover the array of services available to adults that facilitate participation in their community.