The Inter-Agency Autism Coordinating Committee (IACC), a committee that includes the Center for Disease Control, the Federal Drug Administration, the National Institute of Health, Medicaid, National Health and Human Services etc–Full list and links here)  is having a strategic planning meeting shortly.  It would have been held today, but Hurricane Sandy has disrupted their plans–and a lot of people’s lives.

The planning meeting will cover the current strategic plan, and you can email your suggestions to them!

You wish there was better assistance for adults on the spectrum? You want more early intervention? Better diagnostics? You just want to be left alone?

Email them and let them know!

Less than a third of adults with autism have regular employment.   There is a range of statistics regarding the exact rate (here and here and here), but whether the unemployment rate is 68% or 93%, it seems that many people who could potentially work are not working.

For comparative purposes, the US unemployment rate for all people with disabilities (who are non institutionalized) is around 14%, and the overall unemployment rate for the US is around 8%.

There are a lot more kids with an autism diagnosis than adults (because we recognize and diagnose it more now than we did 15 years ago),  and many of these kids receive some kind of special services in school and/or in the community.  However, most of those services end after high school.

As a society, we should want kids to be able to work, so that our tax dollars do not have to pay for them in the form of unemployment, prison, and institutional support.

The issue is:  We don’t actually know how to help people become employable. We have some ideas, but we have a pitiful amount of research in this area.

The largest support program for helping people with autism find work is Vocational Rehabilitation Services (usually known as VR). It is federally funded, and operated on a state level. In 2006, 3,397 people with autism were served by VR.

According to Autism Speaks, 500,000 kids with autism will become adults in the next decade.

Currently,  it costs VR about $30,ooo per year to support a person with autism at work.  For every dollar a person with autism makes in this program, it costs VR about $25.  This study says more.

It doesn’t seem like we can afford to support 500,000 more people in this way.

What can we do?  Here are a few resources from others:

An Autism Speaks list of ideas

A good collection of stats and ideas from Scott Standifer

Jobs4Autism

Specialisterne

Harvard Business School

The proposed changes for the DSM V have been in the works for a very long time. In fact, I wrote about them in 2009.

Here is the basic synopsis:

The conflict:

and some people (read: me) say that ’scientific definitions’ are ever-changing as the depth of our understanding is ever changing. The danger is claiming each new degree of awareness as the absolute final word.

Almost every family I’ve worked with considers some kind of medication for their child with autism at some point. Lots of people end up getting prescribed some kind of medication. In fact, more than half the teens with autism that I know take at least one medication. They actually take some pretty serious stuff.

I’m distressed every time I go to look up research about meds for autism. It’s not that I think medication is bad–I’ve actually seen some kids really benefit from taking psychotropic/anti-psychotic meds – but I think the system and the background research is imprecise.

Consider the following:

The lack of research is distressing for families, and potentially harmful for kids.

Empower Autism is hosting a lunchtime networking event at the Family Support Network! We are excited to welcome members of the professional community to this casual drop-in event. We plan to provide light food, lots of introductions, and a follow-up contact list for the people who attended. If you’re interested in stopping by, please RSVP to Sylvia via email: sylvia@empowerautism.com

THANKS!

In March of 2010, an article by Nancy Bagatell appeared in a special issue of Ethos: Journal of the Society for Psychological Anthropology (Vol 38, Issue 1).

It’s called From Cure to Community: Transforming Notions of Autism, and it’s solid. Here are some excerpts:

“The purpose of this article is to explore how individuals with autism are challenging the widely accepted biomedical views of autism and forging an autistic community. Here, I purposefully use the terms autistic and autistic community instead of person-first language (i.e., person with autism). This is the preferred language of the members.”

I like how she focuses on what adults with autism are doing/thinking, instead of what neuro-typicals think about people on the spectrum. I also like it that she goes ahead and says ‘autistic’.

Later in the article, Bagatell draws attention to the increasingly unwieldy range of the autism spectrum, and a trifecta of events which have helped to shape the autism community. Check it:

How is it possible that an autistic community has emerged? Given that, from a biomedical perspective, autism is characterized by significant social and communication deficits and repetitive and stereotyped behaviors, restricted interests and activities (American Psychiatric Association [APA] 1994), people with autism would seem to lack the skills essential for the establishment and maintenance of a community. The emergence of the autistic community can be linked to three historical trends: (1) the broadening of the autism spectrum to include HFA and AD; (2) the emergence of the disability rights movement and, specifically, the self-advocacy movement; and (3) the explosion of computer technology, specifically the Internet.

Good work, Nancy Bagatell. It’s really good to see the community pride trend documented in the scientific literature. Want to read the whole article? DO IT.

Our schedule for this post: FIRST disclaimer, THEN soapbox.

Now, I’ll admit right now that I’m no fluffy optimist. I’m not as bitter and blustery as several of my ahem fellow bloggers, but I do have a sarcastic side, I try not to be too corny.

All that being said, I have high hopes for Autism Awareness Month every year. I truly enjoy the people with autism that I know, and, framed simply, I want others to be aware of how cool it can be to really know someone with autism.

ADDITIONAL DISCLAIMER: Statistically speaking, there are probably people with autism out there that I wouldn’t enjoy, and OF COURSE nobody is a joy to be around ALL the time, including me.

So every April, I get a little geeked out thinking about how more people will find about autism…and then the big month comes, and guess what?
1. My google alerts are full of sob stories and fundraiser alerts.
2. I don’t see any more public appreciation than usual (which isn’t much) for any:

So, since we are calling dibs on months to squawk about stuff, I would like to declare the month of May: The Empowered Autism Appreciation Month. Send me your celebrations, love stories, moments of hilarity, and victories having to do with autism. We can appreciate them together.

I only have a few autism news updates this time around. Someone email me if I’m missing something big (that doesn’t have to do with Jenny McCarthy).

Dr. Andrew Wakefield, the doctor who first concluded that autism and the MMR vaccine were linked, was found guilty of over 30 charges by the General Medical Council last week. He has been on trial for more than two years. You can read the Fitness to Practice Panel documents here:

All over the internet, people are spouting reactions. Clearly, I’m a fan of the internet, and opinion spouting, but tonight I am concerned about the larger effects of this extended controversy.

What has the Vaccine Controversy Cost Us?

The vaccine debate is possibly the most divisive quarrel in the greater autism community (meaning people with autism, and their parents, doctors, and general entourage), and it has sapped a lot of our potential strength. I can’t even imagine the total amount of time and money we have spent researching, writing, analyzing, griping, gossiping arguing, blaming, defending, and promoting different sides of this issue. The fact that most of us who participate in this debate are immensely unqualified to speak scientifically about it does not seem to faze us, and, accordingly, the internet is littered with impassioned statements with little to no academic references.

Meanwhile, while we furiously type un-referenced diatribes, our growing community, which most of us agree is under-supported and poorly understood, has to make do without us. When we spend our energy pointing fingers at each other and howling about the idiocy and fraudulent nature of each other’s arguments, we lessen our potential as a united force for good.

I understand that many people feel THEIR vaccine argument just MIGHT be saving incoming children either by keeping them from being vaccinated, or by maintain herd-immunity, and I acknowledge the possibility of this kind of contribution. However, I want to point out that when we non-researchers put our energy towards creating empowered, positive attitudes and programs in our communities (see a list below for ideas), we aren’t gambling with our efforts. We can be reasonably assured that we are contributing positively in a community which can’t afford to waste any energy.

Autism community contributions with a high return rate:

I’m a little behind on the autism news, but several significant events have occurred lately that deserve coverage, even if it’s a little belated.

First of all, check out Matt Savage (left)! This kid can play the heck out of the piano!