Losing the safety net: Adults with autism

It’s been 68 years since the first case of autism was diagnosed. For decades it was considered a rare disorder but in a single generation, autism has become one of the most common developmental disabilities, affecting an estimated 1.5 million Americans. With so many children diagnosed in the 1990s, hundreds of thousands of them will reach adulthood over the next decade. Their needs will swamp the already financially strained state services. At least 10 states have already cut funding for some of those very services, increasing the burden on families.Need to Know’s Alison Stewart spent time with two such families who are ahead of the coming wave — older parents doing their best to provide a safe and happy future for their adult children with autism, in the face of uncertainty.

Related:
Peter Bell on advocating for adults with autism
A generation with autism, graduating into the unknown
Coming of age with autism
When care runs out

Watch the rest of the segments from this episode.

 Full transcript for “Losing the safety net: Adults with autism”

 
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Comments

  • moiar

    Autism rates haven’t soared, autism DIAGNOSIS rates have soared.

  • Delia_huffman

    autism is considered mental illness but influential people didn’t want their children considered mentally ill so they put in a divide. Over 100 years the mentally ill have lacked the resources to keep the mentally ill safe, lack of employment and housing. So why are the autism advocates dividing the mentall illness title? Because of the stigma. Instead of advocating for all mentally ill – they have said to the other mentally ill – that we are better than you. Our children are more important – they deserve more. So why doesn’t need to know do a program on all mentally ill. Maybe we can change the name bi-polar to acute neuro syn-over activity syndrome. OCD to be renamed acute nueral dysfunction. What is in a name?

  • Delia_huffman

    autism is considered mental illness but influential people didn’t want their children considered mentally ill so they put in a divide. Over 100 years the mentally ill have lacked the resources to keep the mentally ill safe, lack of employment and housing. So why are the autism advocates dividing the mentall illness title? Because of the stigma. Instead of advocating for all mentally ill – they have said to the other mentally ill – that we are better than you. Our children are more important – they deserve more. So why doesn’t need to know do a program on all mentally ill. Maybe we can change the name bi-polar to acute neuro syn-over activity syndrome. OCD to be renamed acute nueral dysfunction. What is in a name?

  • Donne_watt

    I have worked as an educator for more than 30 years and have witnessed the amazing increase of students entering school with varying degrees of autism.  My son is a young adult with autism.  Twenty years ago we were trying to determine why my he was having so much difficulty communicating and interacting on any level. We were at a total loss of direction and support.  Most diagnosticians  did not have enough experience with these kinds of cases to even begin to make an accurate diagnosis.  Now autism is so common place that most elementary teachers have had direct experience with one or more students. The epidemic is real.

  • Jha2532

     I think we need to prepare systemically and ficnancial supprorts for them. These are an emergency problems. For their comfort lives….

  • Daniel Lukens

    Private sector jobs? People with autism and their families need help and if their hopes for their children are turned into society’s unrealistic expectations then we do a disservice. Adults with autism can lead happy and productive lives but the majority need supports. These are people who are part of  a unique human experience whose value is intrinsic. If their worth is cast as no more or less than their utility, then it our culture that is, or will be, “disabled.”We can build a life for people with autism if we have the courage to meet the challenge and, in doing so, we can learn their true value and, indeed, a measure of our own.

  • jan

    The democratic party is currently talking about cutting social security and medicare; programs that were planned to continue as long as the U.S. was in existence.  I think its safe to say no program is safe or guaranteed for your child’s life span. 

    As far as having jobs?  My personal, up close observation has been that when they started laying people off, the disabled were first on the list.  My child was hysterical.          

  • http://www.facebook.com/people/Fafa-Sojidellha/100002565544953 Fafa Sojidellha

    Without diminishing the challenges he and his parents face, just
    wanted to say I absolutely loved the personality of Joe — the young
    adult with autism you profiled…Thanks for the insight on this topic.

  • RJ

    No problems will be solved without a systemic approach to birth control. There are not an infinite amount of resources for any group of people, and we all need to accept that putting more in one person’s pot takes it out of someone else’s. Everyone hopes for the best, but very few seem to have prepared for the worst. I chose not to have children I wasn’t sure I could provide for. I help provide for the children in my extended family. I’d like to stop seeing families that ALREADY have better access to resources than my family being permitted access to funds that came out of my pocket. Sorry, but the working poor are tapped out. It may be time to lower your expectations.

  • http://www.facebook.com/profile.php?id=1007655064 Lilly Sanovia

    No, because autism is NOT a mental illness, it is a neurological difference.

  • T Kaymichel

    I have a degree in psychology, and my son is autistic.  I’m sorry you feel your child is stigmatized, but autism isn’t  a personality or psychological disorder i.e. a ‘mental’ illness.  My son has a genetic disorder that effects his neurological function.  It has nothing to do with how it’s named.  It sounds to me as if you have some self-esteem issues to work out.  I agree, we need more programs for the mentally ill.  Maybe if those with their own issues, such as yourself, held off on having children until they received treatment, we’d be seeing fewer messed up people in our society.  If I had know prior to giving birth that I carried this gene, I would have forgone childbearing (my son, who is highly functional, plans not to have children – should he marry – for this very reason).  Not everyone should become a parent.  If you have problems, having a child won’t fill the emotion hole in your life.

  • Marybeth

    I think Joe’s mother had the right idea–form private groups amongst parents to try and find a solution. The government sure isn’t going to.

  • Flames Of Amber

    So.. if a parent finds out their baby isn’t perfect, if they’re poor they should terminate the pregnancy? Autism isn’t something that can be detected in the womb anyway, so your idea is a bit off. It’s not as if these parents choose to have a child with a disability they only find two, three, five years down the line. What are they supposed to do at that point. What you’re saying just doesn’t make sense.

  • http://www.facebook.com/people/Suzanne-Prisk/1468683753 Suzanne Prisk

    Donne – you disprove your own point  Clear as it was, getting your son diagnosed 20 years ago was much harder than it is today. I was also a teacher in the 80s  and 90s. I knew few kids with an autism dx, but several who would have that today. When including Asperger’s, the number of undiagnosed students I had would be enormous. Epidemic is  not an appropriate term.

  • Wloell

    So what are
    the root causes of autism? How many people have to be diagnosed before there is
    sufficient funding allocated to conduct analysis of the contributing factors to
    the disorder performed by an independent body of subject matter experts not
    working for the industrial complex that makes up capitalism until they are
    requested to provide data and information?

  • http://www.facebook.com/people/Alvin-L-Isaacs/1638715789 Alvin L. Isaacs

    We must build a solid care giving system  supported by private donors whom share in this concern!

  • Anonymous

    The CDC has some data and has been tracking autism in a dedicated project (ADDM). Some ideas of causes but no clear culprits: http://michaelmaczesty.blogspot.com/2011/07/autism-spectrum-disorder-asd-by-state.html

  • Anonymous

    The CDC has some data and has been tracking autism in a dedicated project (ADDM). Some ideas of causes but no clear culprits: http://michaelmaczesty.blogspot.com/2011/07/autism-spectrum-disorder-asd-by-state.html

  • Anonymous

    Terrific report this week. There is some CDC data that rates of autism is different in differing states, not sure why: http://michaelmaczesty.blogspot.com/2011/07/autism-spectrum-disorder-asd-by-state.html

  • Anonymous

    Terrific report this week. There is some CDC data that rates of autism is different in differing states, not sure why: http://michaelmaczesty.blogspot.com/2011/07/autism-spectrum-disorder-asd-by-state.html

  • http://www.zone38.net/ codeman38

    Is there any place to find a transcript of this? Of course the video isn’t captioned for the benefit of those of us on the autistic spectrum with auditory processing difficulties.

  • Capriccioso of Port Orchard WA

    This is one of the best prepared interviewer reports, with well-researched questions, on the lack of services for adults with autism spectrum disorder / developmental disabilities.  Having a 25-yr-old son with dxs of cerebral palsy, autism spectrum disorder & ADHD, I, with his father, have struggled since his birth to find private & public resources for developing & teaching skills to expand our son’s positive, learning experiences.  Resources were difficult to find in late 80s & 90s, as many were developing to define & assist education services for the autism spectrum. 
    I saw as former President Bush took govt resources to pay top rich and an indefensible, unneeded war in Irag, to slow the pace of public and private resources for children & adults with developmental disabilities from expanding. I saw the waiting lists develop & grow to unreasonable timelines of services.  I saw from the late 2000s as the ultra-riight has refused to compromise in supporting the needs of all citizens in this country.
    My late USMC Lt Col father (Dec 1991) did not give 24-yrs of military service, + 20-yrs as court reporter, to see his children & grandchildren NOT have the opportunities for education and fair work experiences–My mother did NOT give her life to my father’s military career, 3 daughters & 1 son, & her ailing mother at the end of her life–My maternal grandfather did NOT die early in his life in his fight for for fair working experiences in Illinois & Colorado.  Families before the IDEA and ADA did NOT fight to include their children in education communities to see the opportunities end for their grandchildren and great-grandchildren.  I will NOT give up on seeking opportunities for my son & those with developmental disabilities from those with the power in this country.  I WILL continue to convince that all citizens have the right to THEIR Pursuit of Happiness in THEIR individual communities–& NOT the communities chosen for them by ignorant management ‘saving money’ for their bank accounts. 

  • Anonymous

    You can find a PDF of the full transcript posted above. – NTK Webmaster

  • http://www.zone38.net/ codeman38

    Thank you so much for this! Now I actually have an idea what everyone was talking about in the comments– and will probably leave a comment with my own thoughts when my brain’s a bit less foggy.

  • Danny

    Yes, what RJ is saying does make sense. It’s just evolution in action. Sure, everyone would like to have perfect genes to pass on to thier children, but it isn’t the responsibility of the majority who are genetically normal (or superior) to enhance the survivability of the genetically flawed. Yes, it is sad for those parents who have those children, and it’s sad for the children themselves. That being said, it is not the responsibility of society or government to take up the burden. The idea that it is the place of government or society to take responsibility for individuals who are a drain on the system could eventually lead to genetic flaws like heart defects, etc. spreading throughout the population and weakening the decendants of society as a whole in several hundred years.

  • Capriccioso

    From what you said, “…individuals who are a drain on the system could eventually lead to genetic flaws like heart defects, etc. spreading throughout the population and weakening the decendants [sic] of society as a whole in several hundred years.”; it’s unconsciousable you are putting this ‘stuff’ here.  You are saying a person happening to have physical disabilities could not have skills and abilities to give to society?  Stephen Hawking has more intelligence in his little finger that what it sounds like you have in your whole head.

    There is no perfect human with perfect genes.  I could bet you too will someday come upon your defective gene causing some sort of medical disease.  The Nazis once tried horrifically to establish their ‘perfect’ genetic world you so ignorantly claim is your perfect society. Their evil power was wiped out by genetically flawed humans.   

  • ASTEP

    This was a terrific piece, highlighting an issue that is a crisis in the autism community.  Last year I
    founded the Asperger Syndrome Training & Employment Partnership (ASTEP), to
    make significant changes in
    how employers think about hiring and accommodating individuals with ASD’s in
    the workplace.  ASTEP’s mission is to create and support
    programs that result in long-term employment for adults with Asperger Syndrome
    (AS) and high functioning autism (HFA).  We do this by focusing on large national employers. 
    Our goal is to educate employers about the strengths and challenges of
    individuals with AS and HFA and to get them to work with us to create and
    execute a strategy to hire adults with AS/HFA as part of their diversity
    programs.  We strongly believe that disability is the next frontier in
    diversity for all employers.

     

    ASTEP’s Executive
    Director is Michael John Carley, who is also the founder and Executive Director
    of the Global and Regional Asperger Syndrome Partnership (GRASP). With over
    6,000 members, GRASP is the largest organization in the world for adults on the
    spectrum.  ASTEP has been speaking at conferences on Diversity and Inclusion in the
    Workplace throughout the
    country, and we are in preliminary discussions with a handful of large national
    employers about providing training to their companies on working with
    individuals with AS/HFA.  Not only must we work with individuals on the autism spectrum to teach them workplace skills, we need to educate employers about the benefits of hiring individuals with autism.

  • http://pulse.yahoo.com/_J7DLVSX6CMHWR3VSTNX2LIJNIM Barbara Joy

    Because of the inspiration that autism brings, you can choose to look “out of the box.”  I see your solutions and your confusion from “within the box.”  The box is constructed from the context of a consumer society.  Anyone born in an industrialized country was indoctrinated into a role within consumerism.  But an autistic person is ill effected by the way our society is structured and its behaviors.  So maybe their point of being here is to make it really uncomfortable to just accept our societal indoctrination and force everyone to see something else that is possible.  How could we re-structure our lives to care for each other?  Ahhhhh yes, I have created a solution….coming soon, probably 2012.  Look for “Smart Living”, any developers or funders out there?

  • Lorraine La Pointe

    Allison Stewart kudos to you for taking on the real problems for a person with autism transitioning from school to adult life. Dr. Gerhardt is right we are headed into a tsunami. My son is 21 and this is our last year of school. I think I am more freaked out about this stage of his life than when I had to put him on a bus to go 15+ miles to special ed preschool classroom 17 years ago. 

  • Fab

    Hang in there. I have been fighting for my sons rights for 22 years. I have been very concerned about what would happen to him if I wasnt around.  He is 22 and has his own apartment with the Regional center. With budget cutes there r not very many services for our adult children and what about those who can not get regional services what do they do where do they go?