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.

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?

Last night, in the first Presidential debate 2012, Barack Obama mentioned autism. He said something along the lines of, “families with an autistic child depend on Medicaid”. Which is true. I was encouraged that autism got a little mention in such a public venue…but my twitterfeed and timeline were chock full of people huffily correcting the president, not on the strength of his statement, or the truth of it, but on his phrasing.

Technically, the (current) politically correct term is ‘child with autism’, which exemplifies ‘person-first language’, a rule of thumb that always puts the person in the primary position of the phrase (i.e person who uses a wheelchair instead of ‘wheelchair bound’).

I see the point of person first language, just like I see the point of being careful about how we phrase gender things and race things. To me, the point of careful phrasing is to guide how we are supposed to THINK about abilities/gender/race in a better way, collectively. Correct phrasing is an ongoing prompt to transcend whatever prejudices I harbor.

It is a practice that everyone fails at sometimes. If we simple reduce ‘politically correct’ to another political pitfall then we have lost the point, the only good point, of a practice that becomes more like witch hunt every day.

I think kids (with and without autism) are better at their lives when they get to do stuff that makes them happy.

Many children (people) have to spend a large portion of their day practicing things they are bad at. This is especially true for a lot of kid with autism, who often have to attend a myriad of deficit-based therapies, in addition to going to school (which is usually inherently social).

I am actually really impressed with how well kids with autism manage to cope, considering how much of this negativity and criticism they put up with every day. Shoot, if someone even tells me two criticisms in a row about myself I feel like crying

In fact, on days that are packed full of stuff I don’t feel like doing, I’m a whole lot worse at my life. I’m more likely to be late, to be snappy or slow-witted, and I don’t have any innovative ideas. However, let me have a day where I get to go for a walk, laugh with somebody, hang out with some kids and watch/play sports–or even any ONE of those things, I’m so much happier and I get so much more done. I resent the hard parts less when I get to do stuff I’m good at too.

I don’t think I’m alone in this. I think kids (with and without autism) are better at their lives when they get to do stuff that makes them happy.

For more on increasing happiness etc, check out this great book by June Groden.

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.

“Well, do you want your DS?” asks a one-on-one worker at an activity group I’m leading for the Autism Community Center of Asheville.
“Yeah”, is the response.
“Ok, it’s in the car. Do you want me to get it for you?”

…and this is when I start grinding my teeth. There are a lot of wonderful things about 1:1 services, but an over-dependence on constantly having a personal adult is not one of them. I am too-often reminded of governesses and servants when I watch these failed attempts at professional relationships unfold. Adults who are supposed to be teaching, guiding, and demonstrating independence end up descending into the role of carrier-of-stuff, fetcher-of-forgotten objects, and fall-guy for bad tempers.

To be fair, I’ve totally found myself in this all-purpose, waitress type of role in several of my early direct care jobs. Most places don’t train you how to stay professional, and to empower individuals in 100 small ways each day, instead of taking over.

Saying ‘YOU do it’, is empowering for both sides of a relationship. Should the direct care staff in the example above notice that a kid left his DS behind? Yes. Should said staff be able to predict later trauma when the missing DS is discovered. Yes. Does that mean the direct care staff should trot off to produce the thing? Definitely not.

Instead, consider the following:
“Well, do you want your DS?” asks a one-on-one worker at an activity group I’m leading for the Autism Community Center of Asheville.
“Yeah”, is the response.
“Cool. Go get it.”

In this scenario, the kid is encouraged for knowing what he wants, and empowered to do something about it.
If this conversation is (later) followed up with the implementation of some system for remembering items, then THAT is something I’m totally willing to pay tax dollars for. I’m not as interested in paying for endless babysitting.

I have seen many, many healthy direct care scenario’s (especially at the Autism Society of NC), with professional staff, and good supervision, and I believe that having really good one-on-one support can help people learn to do stuff for themselves…but only when we refrain from doing stuff for them.

In much of my work, I am asked to facilitate or design activities that are accessible to people on the Autism Spectrum. As it happens, this is not rocket science. People with autism do not need to play ‘autism soccer’ or play the ‘autism guitar’. I have not had to create a whole world of activities that did not previously exist. Instead, I tend to support activities that are already fun with clear expectations, and structured choices.

Visual support, or visually based expectations is a way of being respectful to a variety of learning and communication methods. However, all the visual support in the world cannot make a lame activity fun, and planning activities that are actually fun is also a sign of respect.

In the photo above, I am explaining how I want group members to act, using a list of expectations. This particular group of kids can read, and have done groups like this before, so the list is targeted towards them. As they read the expectations, we run through scenarios that could happen, such as not wanting to play a game that is on the schedule. When we read the part that says ‘we can choose which activities we want to do’, I ask them to demonstrate various methods for opting out, such as verbalizing ‘I don’t want to play this one’, or sitting in a place we’ve designated as an ‘I’m not participating right now’ place. These opt-out methods can be supported visually as well.

Usually, allowing participation to be optional is respectful in a recreation setting. However, I have known individuals who respond better to different kinds of choices, such as “what you eat for snack is a choice, but soccer practice is not a choice”.

I’ve found that most people with autism can enjoy a huge variety of activities, despite their purported rigidity and restricted interests, when the activities are explained clearly, and they are empowered with choices about their level of participation.

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: