"Tidal Wave" of Young Adults with Autism about to Flood Cash-Strapped California

Broke California will begin the new decade with crushing debt and wholesale elimination of human services. Meanwhile, President Obama has rankled Congressional Democrats with plans to earmark millions of dollars in NIH funds to find the causes and cures of autism.

Are these two things related? You bet they are.

Barack Obama is not a stupid man. He sees the budgetary train wreck hurtling down the track towards the US Treasury. His Administration knows that the number of adults with autism in this country is about to explode. Parents can't foot the bill, so taxpayers will have to. The price tag will be stratospherical.

Isn't it better to earmark millions in autism research funds right now for NIH to identify the causes of autism - despite outcries from Rep. Obey, Sen. Harkin and others - in order to save hundreds of billions further down the road?

It's called frontloading the budget, and if we don't do it, the coming army of young adults with autism will march in and break the bank.

Anyone who thinks that a lot of people with autism somehow "grow out of their disorder" by adulthood should take a look at an important article published today in the Sacramento Bee.

Here, you will meet California residents such as Marlon Barton, a 6'2", 283-pound "strapping young man who flaps his hands and makes odd noises," according to reporter Cynthia Hubert. "No one knows quite what to do with him," she says.

Marlon Barton is 26 years old and "acutely" autistic. He scares people. My heart goes out to him, and to his amazing mother.

But they are hardly alone.

"As a tidal wave of these youngsters moves toward adulthood with complex behavioral and medical problems, society is largely unprepared," Hubert writes. "The futures of hundreds of thousands of autistic people in America cannot be ignored for long."

Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute, concurs. "We don't have the programs. We don't have the research," he warns. "We have this very large adult population of autistics coming along, and we don't know how to deal with them. We just haven't come to terms with it."

California has certainly not come to terms with it - and I have no idea what will happen to the thousands of young people in need who will be showing up at state offices in the next few years, their parents desperately seeking services.

Currently, 81.7% of all autism cases in the state Department of Development Services system are under 18, but that ratio is about to change fast.

There are now 6,300 adult Californians receiving autism services through DDS. But over the next four years, more than 4,000 teenagers will join their ranks. By 2018, the total number of adults with autism will more than triple, to 19,000 people -- each requiring tens of thousands of dollars (or more) in care, education and support services, every year.

California cannot afford it.

Which brings us back to President Obama. By 2023, the US will have some 380,000 people who will need "extensive adult services," at the cost of billions of dollars a year, Hubert writes. "Care providers are just beginning to grapple with how to deal with the surge, even as governments slash social services to cope with budget deficits."

That may be one reason why HHS Secretary Kathleen Sebelius said the Obama team, "is attempting a 'balancing act' of respecting science while trying to find cures for autism and cancer," according to The Hill newspaper in Washington.

Anyone still trying to lull Americans into complacently believing that autism is a genetic disorder that has always been with us in such staggering numbers (we just never noticed before) needs to stop doing that. Now.

It's time to stop pretending this isn't happening.

Autism's toll on children, families, friends and caregivers has been devastating. President Obama knows that the disorder will now exact its toll on taxpayers. I am encouraged that Federal health officials are finally moving to identify all possible environmental autism triggers - including vaccines - so we can finally learn how to slow this spigot down.

Why not spend money now to find the causes and cures for autism? If we don't, that tidal wave will just keep on washing over us.

Comments

[amandastories]

I believe our son's dx of autism is a convenient label for vaccine damage. He was developing normally but each vaccine was a health hit for him. If you ask, "Then why wasn't every child affected?" I answer that one out of 60 boys in my son's age group seems a very high percentage to me! Thank you again Mr. Kirby for your excellent journalism.

[kwombles]

What is your explanation for the extreme lopsidedness in diagnosis? Why would vaccine damage affect so many more boys than girls? Is all autism vaccine damage in your opinion?

[ObjectiveAutismDad]

As has been stated before: mercury poisoning is about 4x as likely for males as females. Testosterone exacerbates mercury poisoning, estrogen helps reduce. There are likely other toxins that affect males more often than females.

[Roger Kulp]

How many other autistics are there out there over the age of thirty,who have mitochondrial.or other diseases we now know to be associated with autism ? We may never know.High profile adult autistic activists like Ari Ne'eman,will never speak a word about them.To him,and the rest of the neurodiversity movement,an autistic adult who is seriously disabled from childhood onset mitochondrial heart,lung, bowel,or stroke like illness is not disabled by the same condition that caused them to develop autism. They are disabled by "comorbid conditions",or they have another disease with "features of autism" but not autism itself.

As David has pointed out himself,you don't need a vaccine to trigger autism in someone with the right mitochondrial mutation.H­aving an acute infection as a baby or toddler,can do the job can be done just as well.

[Roger Kulp]

foe2Hg wrote :

"Seeing autism as a true medical condition rather than the historically misunderstood mental illness that it has been classified as needs to also be a priority. The kids are getting better due to medical interventions for gastrointestinal issues, poor immune systems and mitochondrial dysfunctions. "

Let's hope it does.Don't forget there are autistic adults out there,like myself,who have struggled all their lives with other mysterious medical problems,that are now being identified as mitochondrial,or autoinflammatory. For years we faced doctors who were frustrated and angry at US because they could not identify the cause of the diseases. Doctors who made up nonexistent psychiatric diagnoses that were tacked on to our autism to "explain" our medical problems as psychosoma­tic.And now that we have an explanation for it all,we are stymied because many of the doctors who see such patients will only see children.

[Liquidambar]

My son is 22 and I applied for SSI for him. On the third try I got a lawyer who said it use to be given automatic with a dignosis of autism, and now it is not!. My son was damaged by a vaccine, high temp which lead to a stroke only six hours after the shot. At the time I found it impossible to gain access to the vaccine court (no lawyer even near locally) and all the red tape was too much for a hill billy like me and others like me. If the tax payers don't want to pay for it , then the tax payer could demand the vaccine manufactures( that have enjoyed protection by the government ) help support these young adults from the profits they have made. .

[CriticalDune]

Funding medical research is critical and yes, David, no sacred cows should be allowed to exist when determining priorities. However, the historic overemphasis of "kids and cures" versus "adults and supports" does a disservice to individuals who have or will age out soon. I for one am not willing to accept continuing the current underfunding of supports for adults who need them now or will in the near term. Your argument that the wave is coming and we are underinvested in research is sound but your conclusion should also call for dramatically increased funding for lifespan supports alongside medical research. By not doing so, one could infer that you're ready to write off a generation, which I know you're not.

Lifespan support issues are where our community can and should come together to impact public policy choices more aggressively. Here's just one recent example of a joint effort: The Autism Safety Project.
http://www.autismsafetyproject.org/site/c.kuIVKgMZIxF/b.5058283/k.BE40/Home.htm

There are certainly more many more projects to follow from AS and other groups. It's way past time for individuals and groups associated with autism to stop demonizing this or that individual or group and agree to disagree on some issues. We need to work together on those issues where we can have a positive impact for all. Supported community based housing, employment, and fighting discrimination are three of the biggest.

[David Kirby - Huffpost Blogger]

Thank you so much for this - I agree with everything you say. I know a number of young people with autism who are about to turn 18, and I want the very best for them in terms of care, education and other services, and even job training. So you are right, I did not mean to imply we should fund research at the cost of services. It's not a matter of needing a bigger slice of the pie; it's a matter of needing a bigger pie.

People who want more funding for autism should not be given a Sophie's choice between more research or more services, including for adults. We clearly need both. Thanks again.

[MNmommy]

Late to the party - but I hope you see this and allow it to post.

Glad that you might be coming around. All the money that's been spent researching whether vaccines have anything to do with autism while many of us have pointed out that the money would be better spent on therapy and services, or even research into effective therapy has been frustrating to watch.

I'm excited about the EARLI study - and the study that Maloney has called for, but at some point, you'll be responsible for educating your constituents that enough has been done and it's time to refocus.

We'll await you.

[Twyla]

Thank you for this excellent article, which is right on the mark.

[usna73]

David, we are part of the wave. My son will be 17 later this year. He will never live independently.

Since my son is assuredly like many others who are vaccin injured, may I suggest a stepped up effrot on the part of all of us similarly situated that includes:

1) Much more political pressure for truly fair hearings in U.S. Court of Federal Claims. The ability to transfer findings ( sealed or otherwise) from Vaccine Court to the U.S. District Court.

2) A larger focus on the part of national organizations, like Autism Speaks, to address the need for services over th lifespan for adults who suffer from autism.

3) The creation of taskforce at the national level to allocate specific funding for this population in providing tax breaks and subsidy for families who care for these adults.

[Erik Nanstiel]

Good suggestions!

[CamJam]

I completely agree as well!

[Lisa Ludwig]

Thank you David Kirby for the wonderful work you are doing!

I read Age Of Autism daily and always make sure I check out your articles that are published here in the Huffington Post. I can't tell you what good news this is for parents of children that have autism. The unfortunate truth is I do worry about how my son will be taken care of when he is older.

At this point he is still young and we are doing lots of biomedical treatment and he has made huge gains! We are praying and beleiving for a full recovery, but no matter what is going on as a parent his future is always in the back of my head. I'm so glad you have written this article to make others aware of how HUGE this tidal wave will be, and when it comes its going to come at FULL force.

Thank you again for all you do!

Mother of a child with autism

[Erik Nanstiel]

Thank you, David. It staggers me to think what we will do to prepare for the time when school age autistics age out of the system. Every school in my daughter's district has a very large special ed program... populated mostly by autistics.­.. and lots of them. Maybe a few downs syndrome kids... but I hardly ever see Downs kids these days. Do you know how hard I have to fight to get a lousy extra HOUR of speech therapy for my daughter in her IEP? Budgets are so tight that the current programs are wholly inadequate, and you basically need a lawyer to come to IEPs with you if you want to improve your child's chances of getting what they really need.

Even if we reform the vaccine program and can stem the tide of new cases adding to this pandemic of autism spectrum disorders (and lesser chronic health problems).­.. we're still screwed. Parents can't afford what's coming... and this mis-managed country can't afford it, either.

[DustyBenBear]

Erik - great comment, and interesting observations -- I can tell you care, and that's why I want to point out the importance of person first language: people affected by autism, or people with autism are just that -- people first. When you say "autistics" or "Downs kids" your expressing that these people are totally defined by their disability -- all of the people that I know on the ASD spectrum, and with a variety of disabilities are full, deep, complicated people with a lot more to them then just their label of a disability.

[Erik Nanstiel]

Dusty, you're kidding, right? We're TALKING about the great numbers of children with autism and the economic impact of those numbers. We're talking about a GROUP of people defined for the purposes of this discussion by the ASD label. Don't cloud the issue by putting words in my mouth. I cannot possibly call all these kids by their first names, now can I?

[foe2Hg]

Thank you, David Kirby for your continual diligence in getting these facts out to the public. You are so correct pointing out that preventing new cases and treating the current diagnosed children will only help us out in the long run.

Seeing autism as a true medical condition rather than the historically misunderstood mental illness that it has been classified as needs to also be a priority. The kids are getting better due to medical interventions for gastrointestinal issues, poor immune systems and mitochondrial dysfunctions. Prevention and healing is a goal that can be achieved and will benefit everyone.

I also was happy to see this just out:

Legislation Introduced to Require First Comparative Study of Vaccinated vs. Unvaccinated Populations

Reps. Carolyn Maloney (D-NY) and Christopher Smith (R-NJ) have introduced the “Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2009,” HR 3069, (HERE) legislation that would require the Secretary of Health and Human Services to conduct a comprehensive, peer-reviewed, comparative study of vaccinated and unvaccinated populations, which has never before been completed.

“Vaccines have been instrumental in reducing the incidence of many once-common diseases, but we owe it to parents and children to study and resolve the questions that have arisen over the possible link between vaccines and neurological disorders,” said Maloney.

- the entire article can be read here:

http://www.ageofautism.com/2009/06/legislation-introduced-to-require-first-comparative-study-of-vaccinated-vs-unvaccinated-populations.html#more