Empower Autism

Archive for the ‘Current Autism News’ Category

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!

Adults, Autism, and Employment

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

DSM V: Diagnostic Criteria Changes for Autism

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 current diagnostic criteria for Autism (299.0 in the DSM IV) is pretty complicated (read it here). One must have several symptoms off of one checklist, and several off of a different list, and one off of a third list etc.
  • Aspergers Syndrome currently has a different list of diagnostic criteria, and is a separate diagnosis (299.8).
  • Austism (299.0) has been clinically indistinguishable from Aspergers Syndrome (299.8) for quite some time. That means different clinicians could diagnose the same person with either autism or aspergers, depending on the day, the clinician, the state, etc. The differences are not very clearly delineated.
  • The new DSM (coming out in May 2013) proposes to simplify the autism diagnostic criteria (read the proposed new criteria here) and eliminate the diagnosis of Aspergers Syndrome.
  • The conflict:

  • Some people with Aspergers are proud of their label/title/diagnosis name
  • Some people want a ’short hand’ way to know if a person on the spectrum is verbal, smart, and socially awkward, or intensely in their own world and ‘Aspergers’ is currently a kind of code word for ‘high functioning’ (which is it’s own controversial term)
  • If the new criteria is more strict (which it is), then less people may receive the diagnosis, so less people may qualify for beneficial services.
  • Some people say the DSM has no business reconfiguring it’s criteria at all, and some say that the field of psychology is obligated to keep improving itself, and informing the public about the newest relevant information.
  • 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.

    Isn’t There a Pill for Autism?

    pills+2

    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:

  • Only 9 studies of psychotropic meds and autism were considered high-quality in a recent systematic review from 2000 – 2010.
  • These nine reviewed different medications and different age groups.
  • There are 9 million doctor visits in regard to “Off Label” use of anti-psychotic medications. That means the FDA hasn’t approved the med to be used in the way the doctor prescribed it.
  • Factors unrelated to clinical presentation seem highly associated with prescribing practices.That means factors like being in foster care or having medicaid increase your chances of being prescribed 3 or more anti-psychotics.
  • 18% of kids 0-2 years old (with autism, on medicaid) use a psychotropic medication.
  • The lack of research is distressing for families, and potentially harmful for kids.

    Autism Professional Lunch

    Autism Lunch

    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.

    Autism Awareness Month Misses the Whole Point

    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:

  • cool projects that people with autism are working on
  • cool stuff that other people do to empower people with autism
  • kudos about how hard people with autism seem to work, all year round, to make sense of neurotypical rules and behavior, and to cope with a consistently high level of sensory overload.
  • 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.

    Autism News Update #5

    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).

  • The federal government is looking for autism research to fund, based on recommendations by the IACC’s 2009 Strategic plan . The proposal includes potential funding for research on adult services, safety of botanical/pharmaceutical interventions, and environmental and genetic epidemiology.Read the proposal…
  • I usually refrain from endorsing products, and I haven’t tried this one, so I can’t speak to it’s usefulness, or usability. However, I think it’s really cool, theoretically. And about time, too! Proloquo2Go™is a new communication product from AssistiveWare, that brings visual structuring, and communication support to the iphone. Cost: $189 for the software & application (iphone not included). For reference, a Dynavox is $6,000 or more.
  • proloquo2go2

    The Other Cost of the Vaccine-Autism Debate

    Andrew Wakefield

    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:

  • Hire people with autism to work at your business
  • Create internships/apprenticeships for teens with autism who share your interests
  • Speak positively to and about people with autism
  • Share your resources about autism (lend out your books, share successful communication techniques, post your favorite autism websites to your facebook)
  • Spend relaxed leisure time with people with autism (this one is more for neurotypicals)
  • Autism News Update #3

    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!

  • In late December of 2009, President Obama appointed Ari Ne’eman, founding president of the Autistic Self Advocacy Network (ASAN) to serve as a member of the National Council on Disability. Ne’eman has autism, and is well-known for his neurodiversity beliefs. You can read a nice article about him that was published in Newsweek in May of 2009.
     
  • The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Tuesday, January 19, 2010 from 9:00 AM – 5:00 PM ET in Bethesda, MD. The purpose of the IACC meeting is to discuss and vote on recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorders Research.
    You can watch the meeting online here.
    You can see more info here.
     
  • The Center for Disease Control (CDC) released new autism prevalence statistics from a 2006 surveillance report The CDC now reports that between 1 in 80 and 1 in 240 (average of 1 in 110) children in the United State has an ASD.
     
  • The Autistic Self Advocacy Network (ASAN) is working on legislation to reduce seclusion and restraints within the schools. The organization is hoping concerned US citizens will be part of a national call-in day next Thursday, January 12st. Read More