Tag Archives | autism

Why I Joined the Boycott Autism Speaks Movement, Part Two

autism speaksI didn’t get everything out about why I decided to join the Boycott Autism Speaks movement in my first post on the subject. I knew that I wouldn’t, hence the “Part One” when I was writing that post. It’s time to get to Part Two.

Here’s the recap from Part One:

I decided to join the Boycott Autism Speaks Movement (visit boycottautismspeaks.com for more information) because:

  • The language in co-founder Suzanne Wright’s 2013 call to action
  • John Elder Robison’s resignation, as one of the very few autistic people actually employed at Autism Speaks
  • The deliberately negative language and fear-mongering around autism in Autism Speaks education materials, especially the Autism Every Day PSA.
  • The low percentage of Autism Speaks’ budget (3% in 2012) that went into support services for autistic people.

Let’s dig a little deeper.

The Judge Rotenberg Centre…Issue

I’m not exactly sure what to make of this because I can’t find information on just how extensive this partnership is. As someone pointed out in comments on Lydia Brown’s article on the affair, it could have been an honest mistake that a display from the Judge Rotenberg Centre showed up on Autism Speak’s Resource Walk at the DC Walk Now for Autism.

But wow. Go with the best-case scenario that they somehow slipped into the roster because someone wasn’t paying enough attention, and Autism Speaks still couldn’t have made a much bigger faux pas.

For those not familiar with the Judge Rotenberg Centre and how it “treats” autistic children, I’ve written about it here. But this article concisely summarizes how the shock therapy administered to autistic children and teens at the JRC has been officially been declared torture by the United Nations. Autism Speaks issued a statement saying that they didn’t support the JRC and the use of these shock treatments.

Yet they were billed as a service provider at an Autism Speaks resource fair. It was very upsetting for many families, and as far as I can see there was no apology.

I don’t want to support an organization that aligns itself, in any way, with an institution that tortures children. Next.

The Other PSAs

Autism Speaks continued the legacy it started with “Everyday Autism” of painting autism as the worst thing that could happen to a child and the people who love him/her, ever, with three others that, had I seen them right after my child was diagnosed, would have devastated me.

“I Am Autism” tries to end on a positive note, but the positivity is all about, “We will conquer this evil thing called autism that ruins every life it touches”, not about acceptance, education, resources…things that my family and I need to know plan a good life for my child, still precious and loveable and absolutely with a bright future, despite an autism diagnosis.

“Neighbours”, for its positive message on all people being able to access health care, also implies that society is only going to accept people that don’t “act autistic”.

When your informational videos are scaring the crap out of people (or making them angry; read the comments on especially the “Neighbours” video), then you have a messaging problem. But this goes further than simply getting the wrong message across. As I said in my first post on this, Autism Speaks co-founder Suzanne Wright has stated that her goal is to live in a world where autism is “a word for the history books.”

I’m extremely uncomfortable with that idea.

Vaccinations

Speaking of feeling uncomfortable…

I haven’t done all the research that I need to on this (but it doesn’t sound like Autism Speaks has either, frankly) and I’m certainly no expert, but Autism Speaks’ stance on vaccination does not sit well with me:

“It remains possible that, in rare cases, immunization may trigger the onset of autism symptoms in a child with an underlying medical or genetic issue.”

They do encourage vaccination on the same page. But for someone sitting on the fence about getting their child vaccinated because of autism fears (especially after hearing some of what Autism Speaks has to say about how terrible life is for everyone involved with an autistic child), just the acknowledgement of a “possibility” that vaccines might cause autism could carry a lot of weight.

Someone should please correct me if I’m wrong, but I thought that the theory that vaccines cause autism had been thoroughly discredited.

Autism Speaks: Bottom Line

Confession time: While I think that Oprah Winfrey has done some wonderful charity work and I admire her for it, I’ve never really liked her. It’s obvious that she holds a tremendous amount of power to influence how people think, and it’s not always been obvious to me that she uses that power responsibly. Reading blogger Ariane Zurcher’s observation in a post about Autism Speaks that “What Autism Speaks says and does is often the first thing that parents and people reading about autism hear,” I’m reminded of that idea of not wielding power responsibly: pushing an agenda on people who are scared and looking for answers, not showing them all sides of a story…

And because they’re so big, they’ve had the power to allocate significant resources to keeping the organization going in the direction it has, even though the autism community has been saying for several years now that their needs aren’t being served. But people can always choose to opt out if they don’t like the direction in which an organization is heading. And it looks as if that’s what’s happening with Autism Speaks.

I’m happy to join that movement.

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Alexis Wineman and Sonia Sotomayor…Where My Thoughts go While Watching TV…

I try to catch “The Jeff Probst Show” when I can, or at least have it on in the background as I do other things. I like his style. I think that Alexis Winemanhe tackles interesting issues (including a number of disability issues in this season, his first on the air as a talk show host) and interviews fascinating people – including Judith “Judge Judy” Scheindlin and the cast of “Push Girls”. He didn’t disappoint on Wednesday when he interviewed Alexis Wineman, this year’s Miss Montana and the first Miss America pageant contestant with autism (her terminology choice, as she and Jeff Probst discussed).

I didn’t watch the Miss America pageant, and I’d never heard Alexis Wineman interviewed before. She seems like a lovely young woman – articulate, intelligent, and certainly a wonderful spokesperson for autism awareness. However, listening to her speak reminded me of questions that arose for me when I saw Supreme Court Justice Sonya Sotomayor interviewed a few months ago. I remember thinking then, “I wonder if she ever gets tired of being interviewed as Supreme Justice Sotomayor, female Justice/first Hispanic Justice/first female and Hispanic Justice and not just someone who was obviously accomplished enough to get appointed to the Supreme Court.” Will Alexis Wineman ever get tired of the media seeing her as The Beauty Queen with Autism (as opposed to a beauty queen, like the other competitors?)

Alexis Wineman, Sonia Sotomayor, and Being Thrust into the Advocate Spotlight

I understand the temptation to focus on the fact that Alexis Wineman has autism. She’s achieved something significant, something that gives her some social status, and like we did with Oscar Pistorius, it’s almost impossible not to hold Alexis Wineman up as a role model chair_sonia_sotomayor1  for other disabled people. She represents the idea that it’s possible for disabled people to make their dreams come true. That’s very powerful.

But I don’t think that it’s any lack of determination or will to succeed that keeps most disabled people from attaining their dreams. It’s the social barriers. William Peace wrote about this quite eloquently when he wrote about Oscar Pistorius right after his arrest. http://badcripple.blogspot.ca/2013/02/more-on-oscar-pistorius-by-andrea.html

And I think that one of the drawbacks of being a disabled person (or a person from any oppressed group in society) who has found a way to break through those barriers is that you become an advocate whether you like it or not. I wrote about this here: http://www.girlwiththecane.com/token/.

If Alexis Wineman or Sonia Sotomayor want to be advocates, more power to them…but I don’t think that they should feel like they *have* to be, just because they’re the “first” to do something.

I feel like our focus is misplaced a bit.

The Least Dangerous Assumption

I did a transcript for Ollibean this week of an interview that they did with filmmaker Ray Ellis. He’s done the award-winning documentary “Certain Proof: A Question of Worth”, which follows three children with communication disabilities through the school system for two-and-a-half years. He and the interviewer, Lauri Hunt, had a very interesting discussion about assuming competence (not just in disabled people, but in everybody) is “the least dangerous assumption”.

If we truly assume competence, then it shouldn’t surprise us that a young woman with autism like Alexis Wineman made it so far in the pageant world. We shouldn’t be making such a big deal as a society that Sonya Sotomayer, a female Hispanic, was appointed to the Supreme Court. While they should certainly be celebrating their achievements, the media story should be that the powers-that-be in their particular fields realized what most of us have known for a long time:

A woman can have autism and still be beauty queen material.

A Hispanic woman can be Supreme Court Justice material.

Not only realized it, but removed barriers to full participation in society to groups that traditionally ran into into them full force…or at least a member from each of these groups, anyway.

It’s a start.

I feel grateful that, even in the very small town in which I work, no one who’s employed me has ever said, “We’d like to welcome Sarah, the first stroke survivor we’ve ever hired!”

How would it make you feel to have your achievement qualified by your membership in an oppressed group?

Learn more about the film “Certain Proof: A Question of Worth” at http://www.certainproof.com/

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Person-First Language: A Reflection and Apology

I’ve had my eyes opened about person-first language.people-first language

Person-first language is a specific way of speaking about people with disabilities. I just used it, in fact, when I said “people with disabilities”. By putting the person before the condition (for example, referring to myself as a “person with disabilities” instead of “disabled”), I affirm my personhood before my condition. I stress that myself and others that I am more than my disabilities.

Readers that are familiar with person-first language likely notice that I use it constantly in this blog. I’ve never liked the term “disabled”, personally. It has negative connotations for me. Particularly right after my stroke, I was hell-bent on distancing myself from the idea that my new physical limitations prevented me from doing what I wanted to, so I wanted my personhood affirmed before my disabilities. I wanted those disabilities to fade into the background as much as possible – not because I saw them as intrinsically bad, but because I wanted them to just be irrelevant.

The Debate About Person-First Language

From the time that I started volunteering with agencies that support with disabilities (there I go again) when I was fifteen, through my developmental services worker training, through my paid employment, the importance of person-first language has been drilled into me. It’s automatic. I’ve read blogs that use “disabled” rather than “person with disability” or “Autistic” rather than “person with autism”, and just thought, “Tsk, tsk, no person-first”, or assumed that the writer hadn’t been educated about it.

After all the times that I’ve said to ask, not assume…shame on me.

A few days ago, I read this post by Lydia Brown over at Autistic Hoya, and had my mind blown:  http://autistichoya.blogspot.ca/2011/08/significance-of-semantics-person-first.html

I had no idea that so many people felt so strongly about being called “Autistic” as opposed to “person with autism”.

I hadn’t considered the idea that person-first language, for so many disabled people (Autistic, Blind and Deaf people in particular) does the opposite of what it’s intended to do.  And I see their point. When you see autism, for example, as part of what makes you who you are, then attempts to compartmentalize it from your personhood are…insulting. They imply that there’s a “you” that exists uninfluenced by autism and its effects on your brain’s wiring. They also imply that there’s something wrong with autism, that your “personhood” would be enhanced without it.

Lydia and other bloggers that I read on this subject made the argument that we don’t use this sort of terminology with any of the other identifiers in life. I do not say, “I am a person with Canadianness/disability advocateness/writingness/daughterness/sisterness/sister-in-lawness/ auntness/ friendness”…I say, “I am a “Canadian/disability advocate/writer/daughter/sister/aunt/ friend”.  You can’t separate me from these things, any more than you can separate an Autistic person from autism.

And I know from experience, from listening to others, from writing this blog and reading other blogs, that I can’t make my disabilities irrelevant. They do affect my experience in this world, no matter how much I wish they wouldn’t. I know that person-first language has not made the “personhood” of disabled people safe from poverty, abuse, assault, and even murder, just because of their disabilities. I like to think that I’ve moved past the idea that my disabilities are something that I *need* to make irrelevant in my life out of fear of peoples’ negative perceptions of disability, but perhaps it’s time to do some personal reflection on this…and some more intense work on self-acceptance (and my efficacy as an advocate).

I am who I am today because my brain functions a bit differently than other peoples’. I am disabled, and it’s fine.

A Sincere Apology

And I apologize from the bottom of my heart to anyone that’s been negatively affected by my using person-first language in this blog. I truly did not realize the scope of this issue. I do think that person-first language has its own strengths. But because I now know the extent to which the debate over the appropriateness of person-first language affects the autism community in particular, I won’t use it anymore when I talk about autism, and I’m seriously going to reconsider whether I should use person-first language at all anymore.

To some it may sound like an issue of semantics, but it’s obviously anything but for many people. I want to be respectful and not make assumptions. I’m rather ashamed that I’ve gone this long without being aware of the controversy over person-first language. Reading the perspectives of the people who’d rather it not be used has been enlightening and truly humbling.

What are your thoughts on this issue?

Another excellent post by an opponent of person-first language: http://juststimming.wordpress.com/2011/08/23/dear-autism-parents/

 

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I Stand With Henry

I’m back to the blog this weekend to talk about a self-advocate that I found out about this week, and to ask you to take five I stand with Henryminutes out of your schedule to let him know, “I stand with Henry!”

Self-Advocacy Rocks

I used to work with teens with intellectual disabilities. Some of them weren’t even aware when they started with my agency that they had any rights. A few from that same group left my program see me on the street now and are excited to tell me about the latest way in which they stood up for their rights.

It’s an amazing privilege, to work with someone on becoming a good self-advocate…to examine with them what that means, and to see it start to sink in. Seeing the person start to apply the skills in their lives – well, that’s a real “this is why I do this work” moment.

It takes courage to stand up for your rights, and practice – it’s a skill. I was always proud of the teens I worked with for trying, no matter how it turned it. I’ve had to do it myself as a person with disabilities, and it can be pretty daunting, even when you’re got support around you. I’m sure that I don’t have to tell many of you this.

Keeping all this is mind, you can understand why I stand with Henry, and why I think you should too.

I Stand With Henry…Do You?

Henry has the makings of an amazing disability self-advocate. A young man with autism, he’s non-verbal and uses a communication device. He wants you to know something:

Personally, I don’t see why he can’t go to his neighbourhood school. I stand with Henry.

If you do too, please show your support by leaving a comment on his video at YouTube, or on the blog that he wrote:

http://ollibean.com/2012/08/23/my-civil-rights/

There’s also a Facebook page:

https://www.facebook.com/IStandWithHenry

It takes a lot to put yourself out there like this. Let’s let Henry know that there are people who have heard his message and that agree that inclusion is the best way to go!

Have a great weekend…

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Business Profile: Anthony At Your Service (Delivery Service, Edmonton)

I mentioned on my blog entry on Monday that I’d come across a video that I wanted to post, but that I was still waiting for some information. I haven’t Anthony At Your Servicegot the information that I was looking for yet, but I’m going to post the video anyway…and I’d like to get your impressions on it. It’s about a young man with autism in Edmonton who has started his own delivery service: Anthony At Your Service.

Anthony At Your Service: Meet Anthony and His assistant, Mike

http://www.youtube.com/watch?v=Yv5nzgrYBIQ&feature=youtu.be

When my friend pointed me to this video, I watched it a couple of times, and thought, “This is the way that we should be supporting people with disabilities to set and meet their goals.”

Here’s why:

  • It’s flexible.
  • It’s person-centred.

Person-centred, flexible supports are effective supports.

I have a feeling that Mike isn’t an agency employee, but probably an independent worker paid for out of some sort of government funding (that was the information that I was trying to get). I’m wondering as individualized funding starts to become the funding model of choice in more and more places, whether people will choose to hire one-on-one workers as opposed to purchasing supports from agencies because agency programs are losing their ability to be flexible and easily responsive to peoples’ needs.

I have much, much more that I want to say about this…but I’ve tried to write this blog about ten times now, and I just can’t seem to easily get out what I want to say. So I’ll leave you today with some questions:

Does this strike you as a good way of supporting people with disabilities? Why or why not?

What did you think about Mike’s observations about the sounds that people make, versus the sounds that Anthony makes?

What do you like best about this video?

Would you use “Anthony At Your Service” if you lived in the Edmonton area?

Check out the “Anthony At Your Service” website: http://www.anthonyatyourservice.com/

P.S. If I was still working in social services, Mike’s job is exactly the sort of thing I’d like to be doing with people with disabilities. It’s a really, really exciting job to me.

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Paul Corby Denied Heart Transplant; Autism Cited as One of Factors

Philadelphia hospitals, I’m now caught up on what’s happening with Paul Paul CorbyCorby. Congratulations, you’re the first in the blog to hear this in Paragraph One of an entry: Meet me at camera three.

Because, seriously, what are you thinking?

Paul Corby’s Story

Let’s bring everyone else in on this, shall we?

Paul Corby is 23 years old and happens to have Pervasive Developmental Disorder Not Otherwise Specified, which is an autism spectrum disorder. He also needs a heart transplant. The doctors at the Hospital of the University of Pennsylvania don’t think he’s a good candidate, “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”

http://www.disabilityscoop.com/2012/08/14/claim-heart-transplant-autism/16251/

I admit that while I’m very grateful for the successful resolution of Amelia Rivera’s case at the Children’s Hospital of Philadelphia, I’m hotter under the collar about this than I used to be. I’m getting really tired of reading about people with disabilities being discriminated against by the medical community because of outdated ways of viewing them and their potential.

Assumption of Bad Outcome

Penn Hospital, this part’s for you in particular.

I see here an assumption that because Paul Corby has an autism diagnosis, there’s automatically such a large chance of a bad outcome that a heart is better off with someone else.

I know that donated organs are scarce, and that a lot of consideration has to go into especially who gets a heart. Yes, there could be aspects of stereotypical behaviour associated with autism that could make the recovery process associated with a transplant difficult. However, I saw a heck of a lot of people when I was in stroke rehabilitation and recovering that had a lot of difficulty with the process, and it wasn’t because of any diagnosis that I knew of…they were just people having a difficult time with recovery! Regular readers know that I went through a few difficult periods myself, that certainly weren’t anticipated and required some extra support from staff while I worked out whatever was happening…but the support got put in place, and the issues got worked out.  You can’t assume that a diagnosis automatically means that a person can’t deal with transplant issues (or that a lack of one automatically means that they’ll be able to, for that matter).

This attitude of “Hands off our heart because all these things could happen because you’re, you know, autistic” is just blatantly discriminatory, offensive to people with disabilities everywhere, and suggests that you don’t have much confidence in the team that would be offering Paul Corby care afterward. Are you so frightened of the word “autism” that you doubt your ability to work with this young man, who is obviously creative, accomplished and, most importantly seems perfectly capable of expressing what he needs and wants? And who seems to have a loving family committed to assisting him to meet the challenges in his life? It seems to me that your support teams would have had to deal with individuals that present many more barriers to positive outcomes after serious medical procedures.

Running Down the Case

Here’s another article about Paul Corby’s struggle:

http://blogs.babble.com/strollerderby/2012/08/07/family-young-man-denied-heart-transplant-because-hes-autistic/

Taking the two articles together, we’ve got this support for him:

  • 2 doctors that suggests that “autism”, as an exclusionary term, is too broad.
  • Other hospitals that are willing to give a second opinion.
  • Paul Corby has an extensive support network.
  • Paul Corby isn’t a smoker or a drinker.

The Point

Penn Hospital. Really?

I’m not asking you to give him the transplant. I understand that you may have legitimate reasons for denying him the transplant that I don’t understand.

But, for God’s sake, take the autism diagnosis out of it. Do the right thing.

Get it together, Philadelphia hospitals.

Petition: “Help My Autistic Son Get a Life-Saving Heart Transplant” - http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant

 

 

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Update: Joe Scarborough Clarifies Comments Regarding James Holmes and Autism

Joe Scarborough’s reaction to criticism from autism advocates about Joe Scarboroughhis statement on James Holmes’ shoot-out in Aurora, Colorado last week may been prompted by an autism diagnosis was quick. The commentary was made on Monday’s edition of MSNBC’s “Morning Joe”, and Scarborough issued a clarification the next day.

http://www.examiner.com/article/joe-scarborough-issues-statement-clarifying-comments-on-autism-aurora-shooting

I don’t know.

You Never Get A Second Chance to Make a First Impression, Joe Scarborough

I don’t get MSNBC. I’ve never watched “Morning Joe”, and until yesterday I wouldn’t have known Joe Scarborough if I’d fallen over him.

So what are my impressions now?

I remember thinking when I first viewed the video of Joe Scarborough’s now-infamous “autism commentary” that he was rambling toward the end. It felt to me like he’d lost his focus. I heard him talking about the challenges of raising a child with Asperger’s Syndrome and thought, “He’s close to burning out. It’s hard for him to talk about this.” It felt to me, after listening to the video several times, that there was a point where he stopped talking about James Holmes and Aurora and started talking about the stress of supporting a family member who just doesn’t fit into society very well.

But take a look at these sentences: “Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale. I don’t know if that’s the case here, but it happens more often than not.” I don’t know how to read this any other way than:

  1. Scarborough believes that the type of socially-disconnected individuals that conduct mass-shootings are more often than not somewhere on the autism scale (there’s no evidence to suggest this.)
  2. Scarborough’s point in bringing all this up is that he believes that James Holmes could possibly be on the autism spectrum.
I suppose that it could be a matter of unfortunate juxtaposition of comments about two separate things: Joe Scarborough’s list of the characteristics that he believes mass-shooters  possess, and autism as an example of a mental health disability that causes isolation and requires a strong support system. But if that’s the case, it’s a very unfortunate juxtaposition, to the point of being unprofessional for a news commentator; Joe Scarborough owes people with autism not just a clarification, but an apology for linking James Holmes and autism in such a way that people who don’t know better walk away after hearing his words saying, “I didn’t know that autistic people could get violent like that…I’d better be careful.”
I’m also not impressed with a bit of “victim-blaming” that I see going on in his clarification. I went through the responses to Joe Scarborough’s remarks that I could find from the major autism advocacy groups, from some well-known journalists and disability bloggers, and what I could find in the media online. I never heard anyone say that he linked “all violent behaviour” to Asperger’s. I believe that’s a significant overstatement, and to say directly afterwards that those who did make that suggestion “missed my larger point and overlooked the fact that I have a wonderful, loving son with Aspergers” is just obnoxious. Here’s a tip on trying to make peace with people that you’ve insulted, Joe: Don’t insult them further by suggesting that the whole affair was their fault.

Bottom Line for Joe Scarborough

You’ve clarified. Now apologize. You’ve got nothing to lose and it really is the right thing to do.

 

 

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Deficit-Based Assessment

I’m participating in a blog hop over at With a Little Moxie (http://www.withalittlemoxie.com/)deficit-based assessment this week about Early Intervention programs…check it out, because there are some really fantastic posts.

1. Therapy for Our Child with Down Syndrome – Meriah Nichols of With a Little Moxie

http://www.withalittlemoxie.com/2012/05/therapy-for-our-child-with-down.html

2. What happens at a 2 year Early Intervention Evaluation?

http://blog.gretchenmather.com/2012/06/07/what-happens-at-a-2-yr-early-intervention-evaluation/

3. Melanie’s Mania: My son IS the Sport!!

http://melaniesmania.blogspot.ca/2012/06/blog-hop-my-son-is-sport.html

4. Birdie and the Child Find Committee. . . via Riding the Crazy Train: Diary of a Delirious Mom

http://delirious-mom.blogspot.ca/2012/05/birdie-and-child-find-committee.html

5. Life is Beautiful: What is an IFSP?

http://teal915.blogspot.ca/2012/06/what-is-ifsp.html

6. NutsaboutNathan

http://nutsaboutnathan.wordpress.com/

I’ll update this post as more blogs join the blog hop.

A Common Theme: Negative Feelings About Deficit-Based Assessment

I’ve never worked with children with disabilities below the age of 3, so I know very little about Early Intervention teams, the methodologies that they use, or eligibility criteria. Reading these posts was, in that sense, very educational for me.  I’m always curious about how things operate in areas of the sector in which I haven’t worked, even if the information pertains to places in which I haven’t lived or worked.

I kept coming across a theme in the posts that I relate to both professionally and personally, though: experiences of deficit-based assessment. It’s difficult to deal with having your child constantly assessed, and keep hearing from therapists in meetings and in reports about how delayed your child is, especially in relation to other children. This sort of deficit-based assessment for services wears on anyone after a while, and it’s a part of the support systems with which I’ve always had trouble.

Why I Dislike Deficit-Based Assessment

Even though some Ontario funding applications have a space to talk about the individual’s strengths, the bottom line is that supports are allocated by how “disabled” the person is and how well the person’s support system assists with managing the challenges associated with those disabilities. Deficit-based assessment is exactly what it sounds like: Focusing on a person’s deficits to determine their eligibility for services, and not their strengths. In the age groups with which I’ve worked, deficit-based assessment is a relatively direct way of obtaining information, especially as services have started to require forms and reports designed to facilitate easy sharing between agencies or team members.  A question such as, “Does the individual require assistance with bathing?  Yes, No, Reminders only”, with checkboxes, lets the individual give specific information that an agency may require to assist that individual to set and reach goals.

Deficit-Based Assessment Feels…Is “Dehumanizing” The Right Word?

However, when I assisted individuals and families to read reports or to fill out intake forms and applications for funding, I found myself constantly apologizing:

“I’m sorry that this is so intrusive. If we get all this information once, then we never have to go through another intake form.”

“I’m sorry that we’re focussing so much on the negative. We just need to let them know what it is specifically that your child and your family need assistance with and what you’ll use the funding for.”

“You may read some difficult things  in this report, but you have to remember that this is your child at one point in her life. There have been improvements since the last report and there’s no reason to believe that there won’t continue to be improvements if you continue with the plan you discussed with the therapist.”

I think I’m especially sensitive to deficit-based assessment because of my experience of applying for Ontario Disability Support Program income supports after I had my stroke. Although I’ve since had many positive experiences with ODSP since, both as a person receiving supports and as a professional, I cried after my first phone call with them – I told Dad that they made me feel “handicapped”.

It seems to me that applying for supports should be more of a strengths-focused process, but I struggle with how to make it so. I do suggest that people try to keep the focus on the person’s strengths as much as possible, within the framework of how supports are currently allocated and evaluated. For example, at a meeting with therapists, perhaps the parent could suggest that the meeting start by everyone at the table stating what they think the child’s greatest strength is.

How do you think we can keep reminding ourselves and support people of the strengths of the people with disabilities in our lives?

 

 

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Intellectual Developmental Disorder and the DSM-V

The deadline for public input on revised diagnostic criteria for autism in the DSM-V is June 15th. There’s been a lot of controversy on this, so be sure that you’re well-informed and that you voice your opinion about any of your concerns. See this blog post for a starting point on where to research what’s been going on with controversy:  http://www.girlwiththecane.com/diagnostic-criteria-for-autism/

Also bear in mind that there’s been controversy over the revised diagnostic criteria for mental retardation, starting with renaming it Intellectual Developmental Disorder.

Yes, “Mental Retardation” is Diagnostic Criteria

And bravo to the American Psychiatric Association for finally moving away from it in the DSM-V.  Services providers Canada and the US have been using the less emotionally-intellectual developmental disorderloaded “intellectual disability” for at least as long as I’ve been involved with developmental services, and the US government has recently made a commitment to use “intellectual disability” in its disability legislation. It’s going to be much easier to get people to stop using “retard” and “retarded” in reference to people with disabilities when there’s no clinical term with the word “retard” in it to give those slurs any false air of legitimacy. Like most things, however, this particular redefinition of diagnostic criteria isn’t that simple:

  • “Mental retardation” changes to “intellectual developmental disorder” (as I mentioned).
  • The criterion that the disability begin before age 18 disappears, replaced by one that the disability begin “during the developmental period”.
  • The IQ criterion, now 70 or under, becomes more flexible, shifting the focus more to  the individual’s level of adaptive functioning.

“Intellectual Developmental Disorder” Doesn’t Roll off the Tongue…

Advocates at organizations such as The Arc and the American Association on Intellectual and Developmental Disabilities fear the DSM-V’s use of “intellectual developmental disorder” and the departure from the more standard “intellectual disability” will confuse people. I do agree that this could potentially happen. However,  it’s not like the official diagnostic term hasn’t differed from the everyday language for years.  I have never in my career, unless I was speaking specifically in clinical terms regarding the official DSM diagnosis with a colleague who understood my context, spoken about “mental retardation” in my work. I use “intellectual disability” with the people I support, with their families, and, the overwhelming majority of the time, with colleagues.  I probably still will, unless a superior directed  me to use “intellectual developmental disorder”. I doubt I’ll be alone.

Now for the Famous “That Being Said…”

I’m fascinated by the “developmental” element in “intellectual developmental disorder”, particularly in light of the fact that there will be more flexibility around the IQ standard. A lot can happen to a child before age 18. They may not be born with a condition that traditionally causes an intellectual disability, but what if a traumatic brain injury caused by a car accident leaves a teen with the severe deficits in adaptive functioning that a teen with an intellectual disability might experience? Or impair ability to perform on an IQ test to the point where it looks as if the teen’s IQ has suffered a drop into the zone associated with intellectual developmental disorder? The developmental element provides a way to assist clinicians to differentiate between what is truly an  intellectual developmental disorder and what disabilities require a different diagnosis and perhaps more appropriate treatment and supports.

Because Diagnosis Determines Supports

For a long time, Ontario’s definition of developmental disability (often used interchangeably with “intellectual disability” in the province) was IQ-bound (as is the DSM-IV’s diagnostic criteria for mental retardation).  I’ve seen how this can make decisions tricky about who gets and doesn’t support within the developmental services sector, particularly for people with an IQ in the low 70s. People in this “borderline” zone got from services that they needed because of a couple of IQ points.

Watching how the IQ criterion sometimes prevented people from getting services that they need, creating more cracks through which people could fall, was very frustrating for me and for others in social services. Knowing that Ontario’s definition of developmental disability is now less IQ-bound and more skills-based is a relief. I was relieved the see the APA making a similar shift in its proposed diagnostic criteria for intellectual developmental disorder. Unfortunately, I haven’t been in a position to get any hard data about how that shift is working for people with developmental disabilities in Ontario, but the move does make intuitive sense to me.

The Bottom Line

I do have concerns:

  • I’d prefer that the APA stay away from the word “disorder”
  • I think that the developmental period in which a person needs to develop the signs of  an Intellectual Developmental Disorder in order to receive the diagnosis needs a description.
  •  I think that diagnosticians are going to want to know how much latitude they have with the IQ criterion, but I assume that they will receive information about that.
We’ll see how this goes.

Please submit any concerns on proposed redefinition for diagnostic criteria in the DSM-V before June 15:

Intellectual Developmental Disorder: http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=384

Autism Spectrum Disorder: http://www.dsm5.org/ProposedRevision/Pages/proposedrevision.aspx?rid=94

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Music Therapy and Intellectual Disability

I once supported a young man with a severe intellectual disability, who was unable to roia rafieyancommunicate verbally, who cried every time he heard the Canadian national anthem. No one involved in his life knew why, and he unfortunately couldn’t tell us any in any other way. Something about that piece of music obviously touched him deeply, for better or for worse.  I don’t think that anyone would deny that music is powerful, least of all Music Therapist Roia Rafieyan.  I heard a fascinating interview with Roia on Friday about her work with individuals with intellectual disabilities.

Roia Rafieyan’s Work

Roia Rafieyan is a music therapist in a state institution for people with intellectual disabilities. Many of the people that she supports are on the autism spectrum and don’t communicate verbally, yet come to her with deep issues like abandonment or trauma, and it’s difficult to establish a therapeutic relationship. Roia uses a therapeutic approach called “object relations” to work with clients through song and music.

Object relations is very process-oriented. Clients have goals, such as learning to indicate appropriately when they want to end a session, or making eye contact. Ultimately, however, therapy is more about building the relationship between the therapist, client and the music. Ideally, people will want eventually want to engage in any goal behaviours because they’re in a relationship that means something to them.

Roia uses singing and music to let people know that she’s listening to what they have to say, and to give people ways to respond to her. She gives choices about what their responses can be: “If you’d like to continue, look at me, and if you’d like to do something else, tell me with your voice.” She talks about having a conversation with a person who doesn’t communicate verbally with her in session, but with bells.

Person-Centred in a Non-Person-Centred Environment

I think what really delights me about Roia Rafieyan’s work in the context in which she does is that it’s very person-centred. It puts the client and their needs at the centre of the session and lets them make choices, which is the essence of person-centred planning in any context. She talks about how life in an institution is usually “Do this” instead of “What would you like to do?”, and about how being in dialogue with someone else is often a new experience for the people with whom she works. Roia says that she has to model “dialogue” and show people what’s involved with it.

Roia’s work in an institutional setting gives people who don’t get much choice in their daily routine or opportunity to express themselves to be in control of their experience for a brief period. The fact that Roia *does* cultivate relationships with people and be in dialogue with her clients in a testament to how powerful her person-centred approach actually is. The key to this powerful approach is careful listening, which Roia says is 95% of her job.

“I think our clients really understand a heck of a lot more than they’re able to convey to people,” Roia says.

I find Roia’s approach very intuitive, and her work is very exciting to me.  She obviously has a deep respect for her clients and a passion for her work, and it’s so interesting to hear her speak about what she does. I’ve only touched on the interview’s major points here. It’s really worth a listen. http://www.blogtalkradio.com/mtshow/2012/04/27/music-therapy-and-speech

Roia Rafieyan’s blog: http://mindfulmusictherapist.blogspot.ca/

Roia Rafieyan’s music site: http://www.roiamusic.com/

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