Proposed Changes to Autism Diagnostic Criteria and “The Big Bang Theory”

So…I Was Reading About the Proposed Changes to the Autism Diagnostic Criteria in the DSM-V

I thought that I would be steadfastly opposed to the propose changes for autism diagnostic criteria. But I was surprised to find myself, diagnostic criteria for autismafter reading some articles and some parent blogs, unsure about where I stand on them.

It’s not that I don’t believe that the conditions that are most likely to be affected by changes to the autism diagnostic critera (Asperger’s Syndrome and Pervasive Developmental Disorder Not Otherwise Specified) don’t exist. It’s not that I don’t share concerns that the proposed DSM-V autism diagnostic criteria might narrow the definition of autism so that people who would have been diagnosed with Asperger’s or P.D.D.N.O.S. might not be any longer, and therefore be denied needed supports and services.

I just wonder if we’ve built Asperger’s especially up in our minds (at least in some cases) as something that requires more supports and services than it actually does. If so, the changes to the autism diagnostic criteria might actually move us back to a more balanced view of autism and of people.

I think what really brought this out for me was a quote from a mother of a woman with Asperger’s saying that she was afraid that her daughter wouldn’t get into supportive housing if she lost her diagnosis under the new autism diagnostic criteria for autism, and another quote from Lori Shery, President of the Asperger’s Education Network:

“If clinicians say, ‘These kids don’t fit the criteria for an autism spectrum diagnosis,’ they are not going to get the supports and services they need, and they’re going to experience failure.”

“God forbid they experience failure,” I thought.

Lessons from “Sheldon”

Sheldon Cooper, one of the main characters on the CBS hit “The Big Bang Theory”, is seen in different ways by different people. One group (which includes my father) sees the character’s tendency to take everything literally, his apparent lack of empathy and inability to understand social cues and rituals until they’re explained to him, his focus on his own set of rituals, and his difficulty with dealing with changes in his routine, as delightfully “quirky.”

My friends in social services and I see him as a wonderful study in Asperger’s syndrome, although it’s never been mentioned in the show.  It doesn’t matter. Sheldon has his own group of (non-disabled) peers, including a roommate, a girlfriend, and friends at work. His “quirks” sometimes drive them crazy, but they’ve developed ways of dealing with them.

Sheldon doesn’t always thrive in the “real world”, by any means.  His difficulties relating to people and understanding social conventions cause him setbacks, and he doesn’t always understand what has happened and why. But he functions in his job and his relationships, without a diagnosis and without any formal supports.

I’m really uncomfortable with the idea that social services’ role is to protect people from failure, or surround them with so much support that they can’t be “quirky” anymore.  Because people with disabilities need to learn how to deal with failure, just like the rest of us…and part of making society truly inclusive is learning to deal with other peoples’ “quirks”, whether there’s a diagnosis attached to them or not.

Asking Tough Questions…

To be clear: I’m not denying that Asperger’s Syndrome and P.D.D.N.O.S. may present challenges that require support. The proposed changes to autism diagnostic criteria in the DSM-V need to take into account that some vital supports, including respite, require a diagnosis, and researchers need to question whether their plan to use one set of criteria to diagnose all the autism spectrum disorders actually captures the full range of the spectrum. For our part, as parents, educators, advocates, and agency workers, we need to ask ourselves some questions before we start to panic about the implications of the new autism diagnostic criteria:

  • How are our attitudes toward  and perceptions of autism and disability affecting our reactions to this news?  Is our thinking accurate in all areas?
  • Regardless of whether the new autism diagnostic criteria goes through, how do we teach society to see the person before the diagnosis, and realize that there are people out there who (for a variety of reasons) have trouble in social situations?  Sometimes that’s just who people are…

I need to do some more reading on the proposed changes to the autism diagnostic criteria. I’d like to hear other peoples’ thoughts.  Click these links to learn more about the proposed changes and their potential implications:

And more on “The Big Bang Theory”:

Time to Rethink Sheltered Workshops?

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Image Description: Four hands against a partly cloudy sky with a sunburst at the top left corner make a house – two hands with the fingertips touching, tilted away from each other at approx. 80 degrees make the roof, and hands with the fingertips touching the lower palms of the roof hands so that the palms face each other make the house’s body.


A class action suit was filed on January 25th in Portland, Oregon on behalf of the Cerebral Palsy Association (Oregon chapter) and eight individuals with intellectual disabilities. The first of its kind in any state, the suit claims that sheltered workshops as they are run now in Oregon are in violation of the Americans with Disabilities Act and the Rehabilitations Act.,0,7475636.story

Very interesting. I hope they win, and that similar suits are filed in other states. It wouldn’t hurt to see some more action in Canada on this either, although there’s already been significant action in Canada to move away from the sheltered workshop model.

I’ve Heard the Arguments for Keeping Sheltered Workshops

  • Parents and caregivers like them because they give people with intellectual disabilities a place to go for the day.
  • People who have been in sheltered workshops for a long time often like them because it is a place to go during the day where they can be with their peers, do some work and make a bit of money.
  • It’s an easy way to give people with intellectual disabilities some employment opportunities.

Those Arguments for Keeping Sheltered Workshops Don’t Work for Me

  • People with intellectual disabilities deserve more than a “place to go for the day”. Agencies should not be providing baby-sitting services or warehousing facilities. As the article points out, that’s going back to the days of institutions.
  • If a person with disabilities wants to meet up with other friends who have disabilities, why come to a sheltered workshop to do it? Why not go for lunch or coffee, or visit someone at their home, like people without disabilities do?
  • Why do a job in a sheltered workshop setting and not receive adequate compensation when a person with an intellectual disability can do the same job out in a community setting, get paid for the work, make new friends and have new experiences? Isn’t money better spent on providing the support people need to obtain those kinds of employment opportunities?

Oregon Service Providers, Meet Me at Camera Three…

I  know how you guys thought this was a best practice, but you’ve got to look at how you’re coming across, and ask yourself if sheltered workshops are really the best way to meet the needs of the people you support.

Service providers are the ones supposed to be setting the good example for everyone else, by promoting the importance creation of opportunities for them to participate with dignity, equality, and full inclusion. What kind of message does it send to your communities when you, as service providers, keep them sequestered in buildings, without opportunity for interaction with the community, paying them less than minimum wage for jobs?  What kind of message does it send to the people you support?

Think about it.



Bella Santorum Hospitalized

Bella Santorum, daughter of Republican Presidential hopeful Rick Santorum, has been hospitalized. Bella has Trisomy-18, a genetic condition characterized by intellectual disability and severe health issues.

More information on Trisomy-18:

Rick Santorum has cancelled campaigning events on Sunday to spend time with Bella at Children’s Hospital of Philadelphia.  I can’t imagine how difficult it must be to be on the road so much when one has a child with health issues, and I hope they have a good day together.  Let’s hope for Bella’s speedy recovery.

Judge Upholds Order on Accessible Taxis in New York City

Meanwhile, from the “Accessible Taxis in New York City” file…

Despite a motion by New York City’s Taxi and Limousine Commission (TLC), Judge George Daniels’ freeze on the Commission granting medallions to non-accessible taxis remains in effect.

New York seems determined to go down fighting on this one. Seeing as their relatively small number of accessible taxis (and the plan Bloomberg had previously proposed to meet taxi access needs for city residents that use wheelchairs) was found to violate the Americans with Disabilitiesaccessible taxis in New York City Act, one wonders why the TLC thinks that New York City should be above the law.

I was not aware that they had filed a motion to stay Judge Daniels’ order on accessible taxis in New York city.  It does seem in keeping with the arrogance, not to mention the disregard for the transportation needs of both citizens of and visitors who use wheelchairs, with which Bloomberg and his crew have handled the lawsuit over accessible taxis in New York City.

See the category called “Accessible Taxis in New York City” for previous blog posts on this story.

On a Brighter Note…

The Philadelphia Parking Authority (PPA), which also faced a lawsuit in July 2011over lack of accessible taxis, is currently moving much faster with its plan to create a totally accessible fleet than New York is. The city had no accessible taxis in July, and now has three, with plans for 300 by the end of the year. By 2016, Philadelphia will have 1600 taxis on its streets.

Mayor Bloomberg, meet me at Camera Three…

(Which, for those of you who don’t watch “The Daily Show”, is what host Jon Stewart says when he wants to say something to just one person.)

I don’t live in New York City, so maybe I shouldn’t I be talking for New Yorkers that use wheelchairs. But I did have to use a wheelchair for over a year, and I struggled with the accessibility issues that came with it…and I’ve watched my own small town try to become more accessible for people with disabilities. I know that it doesn’t happen overnight. I know that there’s planning involved, and budgeting, and that sometimes it has to happen in bits and pieces, so that sometimes the ultimate goal *is* several years away.

I think that most people with disabilities understand this.  If you took a poll of your voters who use wheelchairs, I think they’d probably tell you that they’re not expecting you to make oodles of accessible taxis in New York city a reality overnight. They’re reasonable people.

But I think they do want to see some movement on the plan to increase the number of accessible taxis in New York city, because this is about more than transportation. It’s about knowing that their mayor values at least their vote enough to take their concerns seriously, and about knowing that their presence in New York and the contribution that they can make to their communities in valued regardless of disability.

Because if you don’t feel strongly about giving people with disabilities an easy way to participate in New York life – that sends a message that you don’t really want them involved in New York life. And that’s a terrible message to have to live with from someone that claims to be representing your best interest.

London has done this. Philadelphia is doing it. You can do it. New Yorkers know it won’t be overnight. But for God’s sake – get started.

Doing a webinar with Martyn Sibley and guests today!

Today I will be part of a webinar that disability advocate Martyn Sibley has organized about employment and disabilities. I will be speaking about how volunteering can lead to paid employment.

The webinar starts at 1 pm GMT, which is 8 am EST…a little early for people in North America, I realize, but it will be worth it. Martyn has several guest speakers lined up.

Sign up for the webinar here:

Hope you can make it!


Rick Santorum Strikes Again

I Know…Again With Rick Santorum…

Rick Santorum

Okay, okay, I realize that I’ve been writing a lot about Rick Santorum lately. I’ve got a lot I could say about the rest of the Republican Presidential hopefuls as well, trust me – the prospect of any of them as US President makes me glad that I live in Canada, frankly. But Santorum always seems to bring it back to a disability issue, and this is a disabilities blog, so he just always gives me a lot to work with, bless his heart.

This time it’s his comments to Piers Morgan on Friday, January 20 about rape that have got me irked.

A Blast From My Past…But This Is Now

As I’ve said in this blog before, I used to be an evangelical Christian and pro-life. I was a teenager, and life was very black-and-white back then.

Life is one big blur of grey now. I know women who’ve had abortions for a variety of reasons – some of them have been raped. In my work, I’ve never had to support a woman with an intellectual disability who’s been pregnant because of rape, but I’ve been in a couple of positions over the years where I’ve had to help women with intellectual disabilities deal with a sexual assault. It’s heart-breaking to have to watch any woman come to terms with “Why me?” and to have to work through flashbacks, and through shame and guilt, and to help them change perceptions that what happened to them was somehow their fault. When a woman’s cognitive capacity to understand these questions and feelings is lowered, it can feel impossible to to help them out of the personal hell that a rape creates.

And yet, on top of this, Rick Santorum suggests that rape victims “make the best of a bad situation” if a rape results in a pregnancy and carry the fetus to term. I wonder if that’s what he’d want for his disabled daughter, Bella Santorum, if she were ever raped (not that I’d *ever*wish something so horrible on her or anybody)? To put that pressure on top of her, after everything that her body and mind would already be struggling to understand and process?

“Make the best of a bad situation” is just too disturbingly close, as commenter Jim Spice said, to  “Relax and enjoy it.”  And it’s too big a burden to ask of any woman, Rick Santorum, but particularly of those that may not be able to understand what has happened.

Now, that being said…if a woman with an intellectual disability is pregnant as a result of a rape, makes her own medical decisions, and says, “I want to keep the baby”…different story. Different story altogether.


Rick Santorum…I want to write something nice about you. Promise American citizens something good regarding disability issues so that can I say something complimentary and then keep you out of my blog!

A Bit of a Rant on Information Accessibility

Another Post About Information Accessibility

Earlier in the month I talked about information accessibility and about how sometimesinformation accessibility systems of getting information to people aren’t set up in a way that’s convenient or even comprehensible ( I found the mother of all examples of this last Friday, and thought I would share it with you.

Ready to Start Driving Again

I’ve had a seizure disorder since my second stroke, caused by scar tissue left after the brain surgery. Because of the seizures, my driver’s license was taken away from me almost immediately after the stroke. In some ways, not being a licensed driver in a spread-out rural community without any public transportation has been just as difficult as learning to live using one hand, but that’s a story for another day.

I take anti-seizure medication, and am finally to the point where I’ve been seizure-free for over a year. This means that I can start the process of getting my license back again – under Ontario’s graduated licensing system, it takes two years to become a fully licensed driver. I decided to write the knowledge test that will let me drive on most roads, with some restrictions, as long as there’s a person who’s had their license for at least four years in the car with me.

Information Accessibility and Me

The nearest place to write the knowledge test is 45 minutes away, so I had to arrange to have my father drive me. I looked on the Ministry of Transportation website to see what ID I’d need to bring, but found information confusing. At one point it appeared that I just needed one piece, and at another point they seemed to want two. I called the phone number of the Ministry of Transportation office in the town where I’d be writing the knowledge test.

The rest of it went a little like this:

1. Voice mail gave another number for people calling concerning licensing *or* two extensions.
2. The phone number was for a bakery.
3. The first extension took me to Service Ontario, a government service centre that doesn’t know anything about licensing. The woman on the phone referred me to the website.
4. When I explained that I’d already been to the website and was confused by what it was saying, she said that I couldn’t ask the driving test people because there isn’t a line for the public to that office.
5. She went to the website to see if she could find the answer to my question.
6. Sensing at that point that I was really annoyed, she said it was a slow day, and she’d make some phone calls to see if she could get the answer and call me back.
7. Which she did. But she still only had speculation – no concrete answers.

Big Questions about Information Accessibility

I do appreciate the Service Ontario woman’s attempts to help me. I know that Service Ontario centres are generally very busy. And I understand that there’s likely no public line to the offices that do driver testing just because the employees don’t want to spend the day dealing with nuisance calls like mine.

But we’re back to the issue of information accessibility. You don’t have to have a high level of literacy to write the knowledge test – you can arrange to do the test orally. I’ve never supported someone with a developmental disability to get a driver’s license, but I know it’s been done. What if I couldn’t read the website? What if I didn’t have Internet access?

What if there’s a question that I just need a human being to answer?

At least the Ontario Disability Support Program takes a stab at information accessibility. Their reading material can be difficult to understand, yes. But there’s a direct phone line to them, with places for people to leave a message for their income support specialist, and the income support specialists have designated days where it’s more likely that you’ll reach them if you call. It may take them a bit to get back to you, but it’s always been my experience that they do (at least in my part of the province).

The government really needs to do some thinking about information accessibility. If government services are going to keep referring people to the Internet for information, there needs to be an overhaul in how the government views the Internet as information tool – websites need more plain speech and diagrams, simpler graphic user interfaces, and more intuitive processes. More public access to Internet is also necessary.

Or, they can put more human beings on the phones.

Which would ultimately be cheaper, I wonder?

More on DLA Cuts and the Spartacus Report

I’m linking to this blog post because I think it shows a bit better Spartacus Reportthan I can explain what is happening with the proposed Daily Living Allowance (DLA) cuts in England.  The Spartacus Report was written to show how necessary it is to keep funding at its current levels.

Scary Stuff

This post was really eye-opening for me. For many, this struggle is a matter of life and death…and when you the numbers behind it, it really is an outrage.

I plan to do more reading about the proposed DLA cuts and the Spartacus Report this so that I can comment more thoroughly and with a greater level of understanding.

Bob Marshall and Why I Won’t Give Up

Now, before anyone gets the wrong idea as I address remarks made by Virginia State Delegate Bob Marshall in 2010…

I am not anti-Christian or anti-religious. Yes, I was raised a Christian and bob marshallchoose to no longer affiliate myself with that belief system, but I choose (as much as possible) not to align myself with any belief system. I have devout religious friends, including Christians, for whom I have a great deal of respect and affection…but I’ve also encountered attitudes from religious people, including Christians, that make me very sad, and sometimes very angry. I read about some of those attitudes from Bob Marshall this week.

Nature’s Vengeance

This goes back to a press conference in February 2010 against state funding for Planned Parenthood (still an issue for many politicians in this election season, by the way). Why bring up remarks from 2010? Because beliefs like these simply have no place in the 21st century:

“The number of children who are born subsequent to a first abortion with handicaps has increased dramatically. Why? Because when you abort the first born of any, nature takes its vengeance on the subsequent children. In the Old Testament, the first born of every being, animal and man, was dedicated to the Lord. There’s a special punishment Christians would suggest.”

Read the full story here:

Sarah’s Anger

I’m a very patient, non-judgemental person. You have to be, in my line of work. But when I read statements like this…my heart starts to race, and I can feel the tears starting to build up behind my eyes, and my breathing starts to become ragged. Comments like this stay with me. I ponder how illogical they are, how scientifically unsupportable…

And eventually I cry over them, because I wonder how people with disabilities can ever hope to be regarded as equals, or hope to live a life of dignity and respect and full participation in community life, when there are still people out there that view them as a punishment.

Bob Marshall Will Not Stop Me

Sometimes when I hear comments like the ones Bob Marshall made, I wonder why I bother being a disability advocate and trying to make things better for people with disabilities. But then I’ll get a phone call like I did tonight, from a young man with an intellectual disability that I helped to get on his feet after he graduated from school. He just wanted to say hi. But hearing how well he was doing, and knowing that I had helped to get him to that point, made me feel like there’s good in fighting for these people that are *not* mistakes or punishments, no matter who says so.

I will not let Bob Marshall or anyone else take away my conviction that everyone has value in this world, not just the people who are “able”. I refuse to believe that the world…or God…operates that way.