We had an awesome time at the EXPO, lot’s of folks came out and showed off their stuff. Here is who was there:

Empower Autism
Autism Consulting and Training
Camp Lakey Gap
ASNC
Talisman
Jen Oskins
Asheville Parks, Recreations, & Cultural Arts-Therapeutic Recreation Program
The Launch Pad
Olson Huff Center
Autism Pride Week
Aspergers Adults United
Empower Autism
TEACCH
WNC best
Catherine Faherty
Turning Point Services
GRASP
ECAC
Buncombe County Foster Care
The Mentor Network
Asheville Counseling and Wellness Center
Interact Speech Therapy
Shoe Box Tasks
F.I.R.S.T / PLAY project

The new resource list is hot off the presses!
Check it out and print it here!

Thanks to all who attended–I really appreciate your help in keeping this list relevant and helpful. –Sylvia

We are hosting the 2013 Autism Expo in Asheville, NC! Come join us at Mission Hospital’s Reuter Center on April 23rd to find out what new resources are available in WNC!

We will be updating this RESOURCE LIST and adding some cool new projects.

Event Details
April 23rd, 2013
Mission Hospital’s Reuter Center (11 Vanderbilt Park Dr Asheville, NC 28803)
12:30pm-2pm
Free!

If you would like to have a booth at this event, please send me an email

Hope to see you all there!

In the past year, I have come across a large number of older teens and young adults on the spectrum who are struggling with various parts of their lives. Some of them are failing classes, or intimated by taking a large number of credits. Some of them are frustrated with their jobs, or have been fired for poor performance. Some struggle with with healthy habits, or have had arguments with families or housemates.

I have found that the solutions to a lot of these problems are logistics-based. A lot of people on the spectrum have a talent for academics, or have a pay-worthy skill set but have terrible logistical skills (executive functioning). This is a normal part of the ‘peaks and valley’s’ of skills found in many people on the spectrum, but is often over-looked by therapists, well-meaning friends, and family members. A lot of times people who have trouble organizing themselves end up feeling really bad/dumb/inept about themselves, which is a real shame and sometimes leads to a major waste of skills and brain power.

You don’t have to be an excellent clinician to help someone get organized about something. If you know someone with autism who is struggling to make friends, you can go on the internet with them, find something fun, and help them put it on their schedule (phone reminder, written calendar, whatever). Helping people plan stuff like transportation, or the exact change in routine they will have to make can really help. If a person is struggling with school, help them find the math or writing lab, and make some appointments to do their homework in there. Help them get the appointments in their calendar and set a phone alarm.

People on the autism spectrum are often visual thinkers. While some people on the spectrum experience intense emotions, many people do not converse about their emotions very often, and do not spend a lot of time thinking of precise ways to describe the nuances of their feelings to others. Additionally, people with autism often struggle with executive functioning, which is the ‘organizing and logistics’ department in the brain. Your executive function is what helps you recognize a problem, think of options, choose one, and follow through on your choice.

This means that when people with autism come to a typical therapy setting, they are working really hard, because they are practicing stuff they don’t do all the time (verbalizing deep feelings and discussing options). I might compare this to a non-technical person meeting with their tech-support staff for entire hour of technical talk.

If you are this non-technical person, do you want your technical adviser, who you pay to help you, to suggest a few things out loud and send you on your way? Would you prefer that they write some things down so you can remember what the hell they were even talking about? I know I always appreciate written directions. If I’m lost, I want to look at a map, not listen to a paragraph of directions.

All of this seems doubly true for people who are visual learners, and struggle with auditory processing.

If you are the therapist for a person on the spectrum, please do not let them leave your office without writing down your main points. I realize the therapeutic process does not always call for some concrete action points, but some version of a written transcript will dramatically increase your efficacy.

Most families hope that their child will one day hold a job. According to recent statistics, only about 6% of adults with autism maintain any kind of job at all, and less than that work full time or for competitive wages.

This indicates that many high school graduates with autism are not adequately prepared to work.

Most high schools offer some kind of vocational curriculum, internships, and community placement. However, many students are not prepared to access and take full advantage of this curriculum, because they have not developed the pre-requisite skills.

In order to begin training for employment, most people need to be able to do many of the following pre-vocational skills:

1. Understand and accept ‘work times’ and ‘relax times’ of day
2. Sustain attention to tasks (at least 15 minutes)
3. Independently recognize feelings of anxiety, frustration, and anger in self
4. Do non-preferred tasks without complaining/arguing/negotiating
5. Ask for help
6. Follow multi-step directions (out of sight of a prompter)
7. Be comfortable with getting temporarily interrupted
8. Accept suggestions/corrections
9. Read time on a variety of clocks/watches/phones
10. Understand various forms of authority
11. Regularly demonstrate semi-professional social niceties
12. Attend to personal cleanliness/hygiene, including dress code
13. Explore self-awareness: understand/accept diagnosis, learn about accommodations, strengths and challenges.
14. Disclose diagnosis (if desired)
15. Make small decisions independently
16. Demonstrate self-advocacy skills (indicating preferences, not waiting for prompts, making goals, asking for accommodations)
17. Demonstrate safety skills in the community (strangers, unwanted advances, emergencies)

This is a large and possibly intimidating list of skills, which is why is important to start early. Vocational training usually starts in the junior year of high school, and if these pre-requisites are not met, there is not enough time to learn these skills AND access the next level of skills (how to get a job, learn a job, and keep a job).

This is one reason why parents of a kid with autism feel so much pressure–they spend the first 10 years of a child’s life working their tail off just getting them to a point where they can be happy most days–and then this list of skills is suddenly looming. It’s worth it though–keep pushing for those new horizons, because it’s hard to have a happy adulthood without some kind of job.

We have this list as a printable handout if you’d like to bring it in to your next IEP or team meeting.

You should all read this awesome article by Brandon Reynolds on SF Weekly News! It’s called :

Changing Minds: Advocates Reshape How We Think About Autism

Basically, he clearly outlines a lot of the issues that make being an adult with autism complicated. When should we try to change the way kids with autism do things? When do we stop doing that and start accepting them as full adult contributors? It’s not like we have this down pat with typical kids either, but the issue is pretty muddled when it comes to autism or other different kinds of minds.

Anyway, the article is great, and I was so pleased to read something intelligent that echoes my own beliefs.

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

What would the traits of ‘Neurotypical Disorder be?

• Preoccupation with opinion of others
• Illogical fear of solitude Compulsion for anxiety-produced small talk
• Over-comparing of self to others
• Tendency towards unnecessary physical contact
• Illogical fear of differences
  

….what else?

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.