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Sally Burton-Hoyle’s IACC presentation: Teen Transition

22 Dec

One member of the previous Interagency Autism Coordinating Committee (and I hope a member of the next IACC) is Sally Burton-Hoyle. Or to be more accurate, Prof. Sally-Burton Hoyle, as she teaches at Eastern Michigan University and holds the title Associate Professor. In the last full IACC meeting, Prof. Burton-Hoyle gave a presentation on the “Teen Transition”. I apologize that the closed captioning is not present in this video. One can find the video with the closed captioning at the NIH videocast website, here. Click on chapter 14 and you will go straight to her presentation.

She presents on the program to support autistics at Eastern Michigan University. The program seems like an excellent support system for autistics in college.

All to often, we in the autism communities seem to present our advocacy groups as primarily divided between adult self-advocates and parents of young kids with a very different set of challenges. And by this point in the article I suspect many people have put Prof. Burton-Hoyle in the category of “advocating for adult self-advocates”. And that would be a mistake. OK, sure, she is doing great work advocating for adults in college, but she is also the sister of an adult autistic who was not a self advocate. An adult who passed away early. And Prof. Burton-Hoyle brought that breadth of experience to the table at the IACC. And in my opinion that breadth of experience and breadth of advocacy is much needed on the IACC. There is a place for advocates with a more narrow focus, but with so few seats and such a varied autism community we need people on the IACC who will advocate for multiple sub-communities within the broader autism community.

By Matt Carey

Autistic adult restrained and sedated

5 Dec pascoe

The day I finished writing about a new study on emergency service use and how this often ends up resulting in physical restraints and/or sedation (Autism, emergency rooms, sedation and restraints) I became aware of the story of James Pascoe, an autistic adult who went through a crisis and was taken to hospital and now as a result has been both sedated and restrained for now over two weeks.  His parents have started a petition asking the Australian prime minister Premier of Victoria, Australia to act (Daniel Andrews: our autistic son turned 21 last week shackled to a hospital bed – don’t let him suffer from neglect any longer). At present the petition has 39,000 signatures.

The story has been getting worldwide attention. This story from the Daily Mail has a fairly lengthy discussion:Australian couple outraged after their autistic son is shackled to a hospital bed for FOURTEEN days

The short version is that Mr. Pascoe has seen increasing difficulties since he turned 16. His parents link this to grief over the loss of his grandmother, and a lack of support to help him come to terms with death. Years back Mr. Pascoe also lost his little sister when she was 4 1/2 weeks old. Per the parents, Mr. Pascoe has not been able to deal with these loses and has been left fearful of ambulances. A quote from his mother:

‘He couldn’t even go in the ambulance to hospital because he was scared that he would die, everyone who had been taken away in an ambulance died,’

DHS in Australia says that the family has been offered two placements. The family contends these are not appropriate. I am unaware if details of the offered placements are public.


Again, more details can be found at the Daily Mail story and at the petition.

By Matt Carey

Dan Aykroyd, still autistic after all these years

5 Dec

With all the recent hullabaloo about how celebrities being autistic somehow harms the autism community (if you don’t know what I’m talking about, check news sources for Jerry Seinfeld and autism), one counter example seems to be ignored: Dan Aykroyd.  Mr. Aykroyd is perhaps most famous for his movie Ghost Busters, but his credits are many (including my favorite, Elwood Blues of the Blues Brothers).  He’s a successful entertainer, and a diagnosed autistic.

Begs the question, why no backlash against him?

One can only speculate, so speculate I will.  First, Mr. Aykroyd’s “coming out” didn’t make such a public splash.  In my mind, that’s the most likely explanation for a lack of backlash.  People could see his statement as more of a threat.  Also, with more publicity, people know that their responses will be more widely read.  A second reason for the difference in response is that Mr. Aykroyd handled the topic much better than did Mr. Seinfeld.   Consider these two news stories:

In 2013 he was interviewed by the Daily Mail.  In ‘I have Asperger’s – one of my symptoms included being obsessed with ghosts’, Mr. Aykroyd responded to the question of what is his “worst illness” thus:

I was diagnosed with Tourette’s at 12. I had physical tics, nervousness and made grunting noises and it affected how outgoing I was. I had therapy which really worked and by 14 my symptoms eased. I also have Asperger’s but I can manage it. It wasn’t diagnosed until the early Eighties when my wife persuaded me to see a doctor. One of my symptoms included my obsession with ghosts and law enforcement — I carry around a police badge with me, for example. I became obsessed by Hans Holzer, the greatest ghost hunter ever. That’s when the idea of my film Ghostbusters was born.

Dan Aykroyd: ‘My Harley-Davidson is a form of psychiatric therapy. You get on that and you don’t need a shrink’

My very mild Asperger’s has helped me creatively. I sometimes hear a voice and think: “That could be a character I could do.” Of course there are many different grades, right up to the autism spectrum, and I am nowhere near that. But I sympathise with children who have it.

Let’s do the compare and contrast with Mr. Aykroyd and Mr. Seinfeld.

1) Mr. Aykroyd has a diagnosis.  About 3 decades ago he was diagnosed.  Of course, back then Asperger syndrome wasn’t an “official diagnosis”.  But, of course Asperger’s work on autism goes back as far as Hans Kanner’s work.  Mr. Seinfeld doesn’t have (nor did he claim to have) a diagnosis.

2) Mr. Aykroyd was also diagnosed with Tourette syndrome.  At age 12.  So, having a neurlogical diagnosis early on gives more credence to his later-in-life autism (Asperger) diagnosis.

3) Mr. Aykroyd has acknowledged that his challenges are much less than most autistics. This is a big point.  Temple Grandin does the same thing, by the way.  As do pretty much every self-advocate I’ve ever encountered in real life or online.

So, yeah, Mr. Aykroyd and Mr. Seinfeld approached their public discussions of autism very differently.  And, as a result have received very different responses.

Leaving aside the lack of any “rage spirals” involved in Mr. Aykroyd’s revelation, what about the basic fact that he’s been essentially ignored?  Here we have an autistic, with comorbid Tourette syndrome, who is successful.  Who credits his autism as contributing to his success.

Why is he ignored?  Perhaps that question is asked and answered.  He’s successful and he credits his autism with contributing to his success.  That doesn’t fit into the narrative.  While Mr. Aykroyd is NLMK (not like my kid), he could be a hero for some in the autism community.  Why can’t we have autistic heroes?  Autistic people whom autistics and non-autistics can look up to and say, “Dang, s/he did well”?

The answer is we can have autistic heroes.  We can acknowledge successful autistics.   Because there is no one face of autism.  Autism can be Dan Aykroyd and be people who need extraordinary support so they don’t end up sedated or restrained in an emergency room.  Sometimes we talk about those who meet a more standard definition of successful. Sometime we talk about those with more extraordinary challenges.  And sometimes we talk about the entire spectrum in a single conversation.  That’s what it means to be part of such a varied community.

By Matt Carey

ASAN Series: JRC Survivor Speaks Out

4 Dec

When this article first appeared here at Left Brain/Right Brain only the first three parts of the 4-part series were online at the ASAN website.  Part 4 is now up and I include it here.

JRC Survivor Speaks Out (Part 4)

The Judge Rotenberg Center (JRC) is most infamous for it’s use of electric shocks as a behavior modification method.  But electric shocks are not the only aversive technique they use.  In a four part series, the Autistic Self Advocacy Network presents a rare insider’s view of life at the JRC.   So far three parts have been published.  But rather than wait for part 4, I’ve decided to post links to the articles now.

The series starts with this introduction:

The Judge Rotenberg Center (JRC) is a residential facility in Massachusetts where disabled residents are subject to electric shock, sensory assault, food deprivation, prolonged restraint and seclusion, and a host of other horrifying and aversive “treatments.” The United Nations has condemned the JRC’s treatment of its residents as torture, and disability rights advocates have been trying to get the facility shut down for over 30 years. The Autistic Self Advocacy Network has previously published an in-depth piece about the history and practices of the JRC, which you can read here.

This post is the first of a four-part series written by Jennifer, a survivor of the JRC. We are extremely grateful to have her permission to publish this brave account of her own experiences with the so-called “treatments” the JRC provides.

Here are links to the series so far:

JRC Survivor Speaks Out (Part 1)

JRC Survivor Speaks Out (Part 2)

JRC Survivor Speaks Out (Part 3)

JRC Survivor Speaks Out (Part 4)

By Matt Carey

Autism, emergency rooms, sedation and restraints

4 Dec

When I saw this abstract in my daily summary from pubmed I was saddened to see how serious this problem is. In addition, I was glad to see a paper exposing this great need. The problem in short: autistics are heavy users of the emergency room and are too often subjected to sedation and/or restraints during their visit.

I don’t have the full paper so I can’t see if they do the comparison of emergency room (ER) visits between autistics and non autistics. The authors report 13% of autistics (adolescents and adults) had at least one ER visit in a 2 month period. That sounds high. But how high? If we assume a low estimate, 1 visit per individual in the 2 month period, that would give us 78 visits/100 autistics in a year. Compare this to the CDC stats for the general population of 42 ER visits per hundred people per year. To put it simply: autistics are using the ER about twice as often as the general population. And that is clearly an underestimate given that a major predictor of autistics using the ER is previous use of the ER. Which is to say–there appear to be a fraction of autistics who are frequent ER users.

That is serious enough, but here’s the statistic that really calls for action: 23% of autistics in the ER were restrained either chemically (sedation) or physically. 23%. Any restraint or sedation calls out for action, but this statistic screams of a need for action.

The Autism CARES Act calls for an increased emphasis on services. And here is a great example of a paper that demonstrates the need where specific supports or services would help. Autistics have different and greater needs in the ER. We need to determine now what services those services are. And I do use plural on purpose because it is highly likely that the reasons and the needs of autistics in the ER are varied. We need to figure out why autistics are using the ER more often. We also need to figure out why a large fraction are being sedated and/or restrained. We can speculate and possibly there’s more information in the full paper. But this looks like an area begging for more information.

Here is the abstract from pubmed for this paper:

Predictors of emergency service use in adolescents and adults with autism spectrum disorder living with family.

The use of emergency services among adolescents and adults with autism spectrum disorder (ASD) transitioning into adult health services has not been well described.

To describe emergency service use including emergency departments (EDs), paramedics, and police involvement among adolescents and adults with ASD and to examine predictors of using emergency services.

Caregivers of 396 adolescents and adults with ASD were recruited through autism advocacy agencies and support programmes in Ontario to complete a survey about their child’s health service use. Surveys were completed online, by mail and over the phone between December 2010 and October 2012. Parents were asked to describe their child’s emergency service use and provide information about potential predictive factors including predisposing, enabling and clinical need variables.

According to parents, 13% of their children with ASD used at least one emergency service in a 2-month period. Sedation or restraints were used 23% of the time. A combination of need and enabling variables predicted emergency service use with previous ED use in the last year (OR 3.4, 95% CI 1.7 to 6.8), a history of hurting others (OR 2.3, 95% 1.2 CI to 4.7) and having no structured daytime activities (OR 3.2, 95% CI 1.4 to 7.0) being the strongest multivariate predictors in the model.

Patients with ASD and their families are likely to engage with paramedics or police or visit the ED. Further education and support to families and emergency clinicians are needed to improve and, when possible, prevent such occurrences.

I will note that there is an inherent bias in the study in that they are surveying parents. In doing so, they will miss those adults who are living away from parents.

We have to be able to do better than sedation and restraints for a quarter of autistics who visit the ER. The first step was exposing the issue and for that I thank the authors. But this is only the first step.

By Matt Carey

Jerry Seinfeld, still not autistic after all these years

4 Dec

Jerry Seinfeld made a bit of a stir in the autism community recently by stating in an interview that, well, let’s use his own words:

I think, on a very drawn out scale, I think I’m on the spectrum.

This statement caused some excitement in some quarters and some vocal pushback in other quarters.  Well, that and this statement:

But, I don’t see it as dysfunctional. I see think of it as an alternate mindset.

My guess is that this second statement caused much if not most of the pushback that Mr. Seinfeld received.  Why?  Because it says that, say, Jerry Seinfeld can have autistic traits and those traits are not dysfunctional for him.  Much more, people expressed a fear that Jerry Seinfeld (or someone else with little or no disability) would become the face of autism and that the significant challenges faced by many on the spectrum would be ignored.

Looking back at the first statement above, note that we never get to hear what “it” is.  Is “it” autism in general?  Or, is “it” that part of Mr. Seinfeld’s experience that he identifies as being somewhat like autism?  It seemed very clear to me that Mr. Seinfeld was talking about his own experience, but I can see how others might not see it that way.  In which case we as a community should have said, “Hey Mr. Seinfeld, could you clarify that statement?”  Sadly there won’t be a clarification.  Likely because of the pushback, largely from a few vocal parents of autistic children who face extraordinary challenges due to autism (and intellectual disability and other disabilities), Mr. Seinfeld has made it clear that he’s not autistic and stopped the conversation there.  I never thought he was saying he was autistic, hence that whole “very drawn out scale” caveat he put in his initial statement.

In a newer interview, on Access Hollywood,  here (my apologies but the embed code doesn’t seem to be working or I’d have that video embedded here) we hear Mr. Seinfeld put the brakes on the entire Seinfeld/autism discussion.  The “money” quotes from that interview?  From Time Magazine’s article:

“I don’t have autism, I’m not on the spectrum,” theComedians in Cars Getting Coffee star said Wednesday. “I was just watching a play about it, and … I related to it on some level”

To this observer, the interview comes across as though Mr. Seinfeld asked, “Hey, I got myself into some difficulty.  Could you interview me and help me get out of it?”.  Whatever the background, Mr. Seinfeld put a stop to the discussion.

In the end, we as a community lost a potential ally by using his celebrity to air our own dirty laundry.   We are certainly a divided community on a few issues.  The one in particular here is the way in which some people don’t want to accept the fact that autism is a spectrum.  Autistics have varying degrees of challenges, both due to autism and to other conditions (e.g. epilepsy, intellectual disability, anxiety, etc.) that are common within the autistic population.  One reason I don’t particularly like the term “spectrum” is that implies a one-dimensional distribution, a line with those requiring constant support on one side and those who can manage independently on another.  Well that’s not really accurate.  By that model, the students in my kid’s classroom are all in one narrow band of the spectrum.  But they aren’t.  They are each unique in their strengths and weaknesses.  Autism for one is not the same as autism for another.

But let’s get back to that division.  Some people spoke out about a “war” between “autistic self advocates and parents of severely autistic children” and that the autism spectrum should be split.  Others said that were Mr. Seinfeld to become one of the public faces of autism, he (like Temple Grandin, somehow) would be used by officials to downplay the significant needs of those with great challenges and, again, the spectrum should be split.

We are so divided that we need some sort of civil war to divide the spectrum.  Really?  Here’s the thing, we don’t.  There is a large, growing and vibrant community I in invite those who want division to join it.  The founder of this blog, Kev Leitch, understood that.  He understood it when he made Left Brain/Right Brain a group blog with parents, professionals and autistics as contributors.  He understood it when he built a discussion forum which was inclusive.  The people at The Thinking Person’s Guide to Autism understood that when they built a community with voices from all over the community.  Their Facebook page has over 108,000 likes at this point.

There is a place for advocates who have a very narrow focus.  Say, only autistics with intellectual disability or only self-advocates.  But when you take that to the level of claiming that we should split the community over some “war”, you are doing harm.  The strongest advocates are those who see beyond their own self interests, who advocate for those in the community whose needs differ from one’s own self-interest (even if that “self” interest is in supporting a loved one).

Or, to put it simply, I expect that self-advocates will support advocacy that directly benefits kids and adults who require 24 hour support, like my kid. Just as I think self advocates deserve advocacy support from parents like myself.

In this whole hullabaloo about Seinfeld and autism I’ve seen some reasonable voices.  I’ve saved them for now.

First, from Jerry Seinfeld and Autism, an article by John Elder Robison (autistic adult) at Psychology Today:

Someone like Mr. Seinfeld – by virtue of his public persona – could easily be seen as a “face of autism,” when in fact we are a very diverse community and many of us want or need far more services and supports than Mr. Seinfeld has so far requested publically. The uninformed public could look at him and say, “autistic people are millionaire comedians,” which is far from accurate. Sure, there are some autistic comedians and some rich ones but most of us are somewhere in the middle. We are all individuals.

Then, from Amy Daniels at Autism Speaks in Celebrate Seinfeld, But Don’t Forget Those Whose Needs Are Great:

So while we celebrate the unique abilities that autism can bring, we must not forget that no one “face” represents autism. We need to remember that around a third of those with autism have co-occurring intellectual disability. A similar number are nonverbal and have tremendous difficulty communicating their thoughts and needs. Thanks to research, we also know that most children and adults with autism have related physical and mental health conditions. These conditions include epilepsy, extreme and chronic anxiety, painful gastrointestinal disorders and disturbed sleep.

We don’t need to fear that the one face of autism will not represent our interests.  We need to make sure that there is no “one face” of autism.  It would have been great if Jerry Seinfeld had been one of those faces.  A face of success (isn’t that what we parents want for our kids?) to serve as a hero for some.  That would not have taken away anything from my kid, as long as we had other faces of autism to represent the whole spectrum.

By Matt Carey

Disneyland and the Disability Access Service Card

2 Dec

When Disney announced that they were going to change how they handled services for disabled guests, I and many others were concerned. The old system was very informal and worked well, in my opinion.  It was just a piece of paper and you showed it to people at the line and they would help you by either putting you in a separate disability line or let you go to the exit and get in line there.  It made it possible to enjoy the park without waiting in long lines where the disabled person and, possibly, others in the line would have a much less than optimal experience.  While it didn’t guarantee short lines, in practice that’s they way it often worked.  So people who just can’t take Disneyland for long periods of time could get a “full day” in a few hours.  With Disney costing $90 for kids, $96 for those 10 and older, it’s a big deal if you can only be there for a few hours and most of that time is spent in line.  I could seriously see getting on one, maybe two major rides and that’s it.

But, sadly, informal systems can be gamed easily.  And that’s what happened.  See Rich Manhattan moms hire handicapped tour guides so kids can cut lines at Disney World for an example.  Or just read the title.

Shannon Rosa wrote about the new system over at The Thinking Person’s Guide to Autism as One Autistic Teen’s Disneyland Success Story.   She and Leo visited Disneyland a few weeks ago (Nov. 2014).  Also, there’s Disney DAS from a diary of a mom describing their trip in May to Walt Disney World.

Shannon mentioned in her article that they were about to change the disability access service again.  And by the time I went with my family, changes had taken place.

I’ll go into more detail below, but the main point in how the disability pass works is this: for rides where they have a fast-pass entrance, the ticket for the disabled person is the disability pass.  That ticket works much like a fast-pass.

So, here’s the “more detail” part:

Step 1: go to City Hall on Main Street (it’s too your left as you enter the park).  Bring your entire party and all the tickets.  I stood in line and called my family when I got to the front (that whole, not doing well with lines, thing).

Step 2: At City Hall they will take the picture(s) of the disabled person(s).  They will scan all the tickets.  You need to specify which ticket(s) belong to the disabled person(s).  They ask you to write that person’s name on the ticket. That ticket has to be used for most rides where he/she wants disability access.

You will also be given a white piece of paper with the terms and conditions for disability access.  You will be asked to sign a copy of these terms and conditions.  Keep your copy–it’s your disability pass for rides without the fastpass like access.

Step 3: They will explain the process to you while they scan your tickets so you can get more accurate and up-to-date information than I’m giving here.

Step 4: The Disney cast member who is helping you will ask which ride you want to go on first.  Tell them that and they will scan your tickets and tell you when you can go on that ride.  For example, we said, “It’s a small world”. It was 10:30am.  We were told that any time after 11am we could go to the disability line.

Step 5: Enjoy the park, other rides, shopping, music, resting, etc. until your time.  Any time after your appointed time, you can go to the disability access line for that ride.  Tickets are scanned and you are allowed in line. For It’s a Small World, there is a separate disability access line.  For other rides, say, Star Tours, one goes to the fastpass person.  That person will scan your ticket and then you are in the regular line.  The Star Tours person gave us a plastic laminated pass that we took with us to the next person in line.  I’m not sure what purpose that serves.

Step 6: Once done with a ride, you can get in another “virtual” line with your pass.  There are three kiosks in Disneyland for this.  One in the Main Street central plaza.  One is in Fantasy Land between Dumbo and the Storybook Land ride.  The third is in Tomorrow Land between Star Tours and the gift shop at the exit of Star Tours.  The person at the kiosk will scan your tickets and tell you what time you can get in the disability access line.

Alternatively, one can go to the fastpass person at the line for the ride you want to get on and ask to be put on the virtual line for that ride (and that ride only).  When I went to some rides I was asked “do you want to get in line or are you already registered”.  So, you don’t have to go to one of the three disability kiosks each time.  I got some mixed messages about that, though.  One person told me that I couldn’t be added.

Not all rides have disability access lines or fastpass.  For example, the train. At the train we asked a cast member what to do and were told to just wait at the exit.  When the train came to the station, we showed another cast member our white pass (remember those terms and conditions discussed above?) and got on the train.  Basically, this is how the old disability access pass worked.

Disney has a web page on disability access and strategies: Services for Guests with Disabilities.  There’s a pdf on the Disability Access Service (DAS) there, and I’ve copied it here: dlr-disability-access-service_2014-11-19.

I bring this up because here’s a key paragraph in that document:

DAS, with its virtual wait, will accommodate many of our Guests with disabilities. We recognize, however, that our Guests with disabilities have varying needs, and we will continue to work individually with our Guests to provide assistance.
In unique situations, our Guest Relations staff will discuss special accommodations for persons who are concerned DAS doesn’t meet their needs (e.g., those whose disability limits the duration of their visit to the park or limits their choice of attractions).

All accommodations will be made in person, on site at Guest Relations. We are unable to provide accommodations in advance of a Guest visit.

This tells me they’ve been paying attention to people like myself who have complained that it isn’t just the lines for each ride that matter.  For some of us, our time in the park is very limited.  And at $100/ticket ($90/kids under 10), it’s a big deal to go to Disneyland.  Even with accommodations, my kid was melting down in the last line and we were not at the park for very long.

Next time I’m printing out that pdf (or whatever they have at the time) and bringing it along.

By Matt Carey


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