Tag Archives: Autism

Want to understand acceptance? Listen to I am what I am

8 May

This weekend I saw another production of La Cage Aux Folles. The song “I am what I am” has long been one of my favorites, and the lyrics are posted in my kid’s room. I’ve posted this before, with some explanation. This time, I invite you to listen, read the lyrics and, if you don’t understand why I feel this is so fitting: ask.

I am what I am
I am my own special creation.
So come take a look,
Give me the hook or the ovation.
It’s my world that I want to take a little pride in,
My world, and it’s not a place I have to hide in.
Life’s not worth a damn,
‘Til you can say, “Hey world, I am what I am.”
I am what I am,
I don’t want praise, I don’t want pity.
I bang my own drum,
Some think it’s noise, I think it’s pretty.
And so what, if I love each feather and each spangle,
Why not try to see things from a diff’rent angle?
Your life is a sham ’til you can shout out loud
I am what I am!
I am what I am
And what I am needs no excuses.
I deal my own deck
Sometimes the ace, sometimes the deuces.
There’s one life, and there’s no return and no deposit;
One life, so it’s time to open up your closet.
Life’s not worth a damn ’til you can say,
“Hey world, I am what I am!”


By Matt Carey

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Did autism prevalence increase by 20%? (answer: no)

28 Apr

The CDC came out with a new autism prevalence estimate yesterday. Their estimated autism prevalence is 1.68%.  That’s up from the estimate from 2 years ago (1.46%), but lower than a different recent study (2.76%).

I’m going to discuss some minor-league shenanigans.  It’s no surprise that some groups abuse facts and cherry pick data to make political points.  In this case it was useless.  there was no need to cherry pick.  I’ve done a lot of exposing the abuse of facts by some so-called autism advocacy groups.  I don’t get any joy from noting that people in my community are both dishonest and ignorant of science.  But much as that bothers me, it pales in comparison to the lost opportunities.  Millions of dollars were spent on this prevalence estimate alone, but all some groups do is dig for reasons to justify their “epidemic” story and push the long-ago failed idea that vaccines are to blame.

Over the years, news organizations and autism groups have jumped at the chance to put their spin on each new CDC autism prevalence estimate. Over the years I’ve spent a lot of time trying to unspin the takes of groups like the Age of Autism blog. AoA is, well…if you want to see autism done wrong, read the Age of Autism blog. Science, medicine, human rights and dignity, they can be counted upon to get things wrong.

With that in mind I decided the CDC announcement was a time to break my current trend of ignoring AoA. I literally haven’t read it in months. What I saw was both surprising and typical for them. Surprising in that they didn’t even bother to write their own pieces for the new prevalence numbers. Seriously–they just copied a couple of articles from other sites and left it at that.

By the way–this new low-level interest in autism prevalence appears to me to be a general trend–beyond just AoA. Autism is losing it’s status as having intense focus from the US media and public.  The chance to leverage the public’s interest into meaningul change is waning. That’s a far more interesting topic and far more important than this and I want to come back to it in the future.

So, what did AoA post? Big League Politics BREAKING: CDC Reports 20 Percent Autism Increase In Children and Breaking News: 1 in 59 children Born in 2006 have Autism, 1 in 36 between the ages of 3 and 17. What’s going on?. That first one caught my eye. First because in absolute terms, the autism prevalence increased by 0.22%. In relative terms, that’s about a 15% increase.  They could have said 15% and made their point, but why do that when 20% is even more scary?  More to the point–digging just a little into this 20% figure gives understanding that a true advocacy organization could use.

So how did they come to the idea that the autism prevalence increased by 20%? They skipped to page 13 and took one part of one paragraph out of context and, well, cherry picked. Completely unsurprising. They skipped over pages of data showing that we are failing to identify–and, therefore provide adequate services for–autistic minority children.

Sadly, AoA and their allies have spent over a decade denying this huge issue.   The reason is obvious: it doesn’t fit into the “vaccines cause autism” narrative.  So rather than push for better identification and better services for minorities, they’ve sacrificed these communities in for their political message.

It’s disgusting.

They didn’t dig any deeper into these numbers, even though the data were right in front of them. Also completely unsurprising. If they were the sort of people who dig into data and question, they wouldn’t be pushing the idea that vaccines cause autism.   Seriously.

Here’s the section they are relying upon:

Among the six ADDM sites completing both the 2012 and 2014 studies for the same geographic area, all six showed higher ASD prevalence estimates for 2012 compared to 2014, with a nearly 10% higher prevalence in Georgia (p = 0.06) and Maryland (p = 0.35), 19% in New Jersey (p<0.01), 22% in Missouri (p = 0.01), 29% in Colorado (p<0.01), and 31% in Wisconsin (p<0.01). When combining data from these six sites, ASD prevalence estimates for 2014 were 20% higher for 2014 compared to 2012 (p<0.01).

So, if you only pick the states where there were data in both this study (called 2014 because that’s when the data were collected to be analyzed) and the previous (2012) study, you get about a 20% increase (click to enlarge).

But what happens if you ask “why?”  As in, why do these states show a larger increase than the entire group?

I put some numbers in red and bolded them for emphasis. Those are states with lower than average autism prevalences. Take a moment to think about that–the states with low autism prevalences are showing larger prevalence increases than other states. Start with a low number, and you are bound to get bigger percentage increases.

Missouri, Colorado and Wisconsin started out with very low identification rates.  They’ve improved their identification rates. What if someone were to ask, “how did they do that?  Can we use that elsewhere to serve more unidentified autistic children?”

I’m sure the cherry-picking “let’s find a reason to fit this into the vaccines-cause-autism story” groups have already focused on New Jersey in the above figure.  New Jersey stands out–their autism rate increased by about 19% and they have a much higher autism prevalence rate. New Jersey also stands out for another reason: they aren’t lagging in identifying black or Hispanic autistic children:

In New Jersey, there was almost no difference in ASD prevalence estimates among white, black, and Hispanic children. Estimates for Asian/Pacific Islander children ranged from 7.9 per 1,000 (Colorado) to 19.2 per 1,000 (New Jersey) with notably wide CIs.

Wouldn’t it be great if someone were to say, “how did New Jersey close the gap in identifying some minority groups?”

Groups advocating for a better future for disabled people would do that.  People trying to keep the failed “it’s all vaccines fault” idea alive won’t.

Some people will be confused, and understandably so, at this point.  These are “autism prevalence” numbers.  Doesn’t that mean that this is a complete and accurate count of the number of autistic kids in each location?  No, they aren’t.  The people at the CDC are working hard and doing a good job with the information they have.  But this is a review of existing records, not a test of each individual kid.  The CDC have access to medical and/or school records (it varies by location what sort of records they have).

Keep in mind–the CDC autism prevalence numbers aren’t “these are the absolute accurate numbers for how many kids are autistic”. We are missing identifying kids. Doctors are missing autistic kids.  Schools are missing autistic kids. The CDC tries to make up for this by reviewing the records to determine which kids are autistic (i.e. they don’t just count existing diagnoses in the records–they “diagnose” from the records).  But they still miss kids in their counts. We need to get better. The fact that New Jersey isn’t leaving minority kids behind is huge.  The fact that lagging states are catching up is huge.

Doing things right–checking on numbers is hard. It takes time. AoA not only doesn’t take the time to be careful (which is typical for the “vaccines cause autism” groups), they know that it’s the simple message that scares people. “Autism increased by 20%”!!!! It may only take 5 minutes to actually dig and see what’s going on. But that’s five minutes most people don’t have time for.

Which is the long winded way to say:

A lie can travel halfway around the world before the truth can get its boots on

Groups like AoA live and breathe on taking advantage of that.  They were fake news long before the term was coined.

That said, I knew with the new autism prevalence numbers people would misuse them. It’s pretty obvious.  They’ve used that misinformation to drag parents into a world of guilt and shame for being part of vaccine injuries that, in at least the vast majority of cases, didn’t happen.  Even more, the autism-is-a-vaccine epidemic community had the resources for over a decade to make a real difference in the lives of autsitic people. As we watch autism fade a bit from the public’s view, it’s difficult to not cry a bit for the lost opportunity. It’s that, not their failed logic or twisted facts that is why I wrote the above.

By Matt Carey

Americans are still failing to identify and serve minority autistic children

27 Apr

The CDC recently published another autism prevalence study. It’s 23 pages long and has 26 authors, took 2 years to put together and no doubt cost millions of dollars. Out of that, the one fact from it that will be quoted is simply–the autism rate is now at 1.68%, or 1 in 59.

There’s so much more. But sometimes focusing on one simple message makes more impact than a lengthy analysis. So I’ll pick my own simple message (of my own):

we are failing to identify minority autistic children. And with that, we are failing to provide them the appropriate services and supports they deserve as citizens and residents of the U.S.

We can and we should do better.

Here is table 3 from the report:

The estimated autism prevalence for Hispanics is 1.4%. For Whites, it is 1.7%. Thousands of Hispanics and other minorities are being missed. Overall, thousands of autistic children, and many, many more adults, are being missed. But that’s another discussion.

By Matt Carey

What Autism Awareness Means

20 Apr

We are often told to be “aware” of autism. But what does that do, really? With awareness comes acceptance. And for my son acceptance means being able to live his life.

A few years ago, I took my son for a walk to our local shopping center. We have done this every weekend day since he was in a stroller. This time we passed Nicco’s hardware store, where they always keep a stock of the American flags my son likes to buy. When they see us pass, they often start a fresh batch of the free popcorn he loves.

At the donut store, Mary and Monica helped him learn to buy things and to wait his turn. We’ve been doing this for years, but they never lose enthusiasm. At the bagel store my son walked right up to the counter as where Sylvia handed him his favorite cinnamon raisin bagel with her traditional “this is for you!” To this day, the workers at the bagel store hand him a bagel with a smile as he walks in. He eats while we wait in line to pay.

At our local market, I got distracted, as parents are wont to do. And my son wandered off, as children are wont to do. I ran to the door panicked because I had to make sure he was safe from traffic. Once I was pretty sure he was still in the store, I ran from aisle to aisle, yelling his name. Still scared. And what I found was a neighbor smiling at me, pointing and saying, “he’s over there”.

She knew us. She was aware that he needed support. When she saw him alone, she kept an eye on him.

He was 7 years old then. He’s 14 now. He still needs a lot of support, and always will.

When my father was growing up, people like my son would be institutionalized. When I was growing up, people with disabilities were hidden. Now that my son is growing up, he lives in a time and a community in which people are aware that he needs support. They accept him and know he deserves respect.

Awareness means my son can be in a community. Acceptance means he can live his life.

With a Perspective, this is Matt Carey.

The above was given as part of the Perspectives program on KQED radio. The original, complete with audio, can be found on the KQED website at What Autism Awareness Means

Donald Trump believes that “the education is flush with cash”. How did he get that “alternative fact”?

23 Jan

Donald Trump was inaugurated last Friday. His speech was overall very poor, but one statement stood out to me above all the others. A statement which is not getting much (if any) press:

But for too many of our citizens, a different reality exists: mothers and children trapped in poverty in our inner cities; rusted out factories scattered like tombstones across the landscape of our nation; an education system flush with cash, but which leaves our young and beautiful students deprived of all knowledge; and the crime and the gangs and the drugs that have stolen too many lives and robbed our country of so much unrealized potential.

Emphasis added.

I don’t think anyone who actually deals with the education system in America would consider it “flush with cash”. That said, no one involved in special education would every say such a clearly false statement.

We absolutely are not serving our students, but this is because our education system is woefully underfunded. My own district cut back on many school days a few years ago when California cut the funding sent to districts. Guess what, when funding returned, the district didn’t restore the days we lost. We have about 10 education days fewer than before the budget crunch.

And that’s just in general. Special Education, since the first law in the 1970’s, was supposed to come with 40% of the costs covered by the Federal Government. OK, they said a “maximum” of 40%, but the Federal government has never come close. Estimates are that the contribution is about 17%.

These are the disabled children of our country. Does “America First” mean, “non disabled American’s first”, Mr Trump? Or will you be the one who finally corrects this injustice? That’s going to be hard to do if you think that schools are “flush with cash”.

You’ve come down from your tower to live in a mansion. One walled off from the world. And you surround yourself with people who, like you, don’t understand the experiences of the majority of Americans. And when you make statements like “flush with cash”, it shows.

I’ll be honest, one disappointment with Mr. Obama’s administration was his failure to live up to America’s commitment to people with disabilities, including funding Special Education. How about you prove you can do better than Mr. Obama–don’t tell us that school systems are “flush with cash”, make them flush with cash.


By Matt Carey

Thank you to Lorna Wing, Ruth Christ Sullivan and so many more

4 Nov

Last weekend I was having lunch with my kid. Yes, we interact a great deal in these lunches but, yes, I also take some time to read. I was re-reading Steve Silberman’s book Neurotribes. There is a great deal of discussion in Neurotribes of people who changed how we understand what autism is, as well as how we (we =autistics and non autistics) relate to autistic people. Much of this comes out in one of the last chapters, where the discussion of how the film Rain Man came to be produced. Two of the many names that came up were Lorna Wing and Ruth Christ Sullivan. Both were parents of children with very high support needs. Especially in their time, the people involved in shaping the understanding of autism and autistics were largely parents.

Both Wing and Sullivan had children with high support needs. And, yet, Wing was instrumental in bringing about the understanding that autism is not just about people who were like her child. Wing brought the work of Hans Asperger from out of obscurity. None of this “not like my child” stuff. Sullivan helped found the National Society for Autistic Children (what we know today as the Autism Society of America). She was lobbied to get special education passed in the U.S..

And as I read about them, again, I was struck with, “I never wanted to be a part of advocacy. I just want to live my life with my family.” I want to quietly eat lunch with my kid and read books, and probably not autism related books.

It wasn’t until later that a few things dawned on me.

I was sitting in a restaurant, having lunch with my kid. A kid who is very, very clearly autistic. And who was being very, very obviously autistic. Something Lorna Wing and Ruth Christ Sullivan almost certainly couldn’t do. And something that is only possible now because people like them (as well as many others, including autistics) accomplished in acceptance.

Seriously, in their day I would have been asked to take my “retard” kid out of the restaurant and not come back.

I am able to sit in a restaurant because my kid attends an excellent school. I won’t go into details, but, yeah, good school = better life for all of us. And without special education laws that wouldn’t happen. And without the understanding of how to support autistics, brought about by so many that came before me, a good school wouldn’t even exist, law or no law. That school and our opportunity to send our kid there exists because of the hard work of so many people who came before me.

I’m no Lorna Wing. I’m no Ruth Christ Sullivan. I’m not one of the many autistics who have helped change the world–autistics who are “not like my kid” but who have, nonetheless, helped get my kid and me into a world where we can sit on a quiet Saturday afternoon and eat noodles. One of us being clearly autistic, and the other reading a book. And most of all, both of us welcomed.

So I’ll try to keep doing what I can to help keep progress happening.

by Matt Carey

Autism Speaks founder Bob Wright’s opinion is more important than science

24 Sep

Last year the Chief Science Officer of Autism Speaks made a simple and clear statement

“Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.”

It was nice to finally see someone from Autism Speaks make a clear statement without a lot of equivocation and “leave the door open” language.

But what I think is nice and what Bob Wright, the founder of Autism Speaks, thinks is nice are two different things.  The Wright family is, at least, sympathetic to the idea that vaccines cause autism (and, in at least one case, very outspoken on the idea.)  So perhaps I should have been surprised when Autism Speaks put on their website Rob Ring’s statement together with a statement by Bob Wright.

Over the last two decades, extensive research has asked whether there is any link between childhood vaccinations and autism.  The results of this research are clear: Vaccines do not cause autism.  We urge that all children be fully vaccinated.
Rob Ring
Chief Science Officer, Autism Speaks
Over the last two decades extensive research has asked whether there is any link between childhood vaccines and autism. Scientific research has not directly connected autism to vaccines. Vaccines are very important. Parents must make the decision whether to vaccinate their children. Efforts must be continually  made to educate parents about vaccine safety. If parents decide not to vaccinate they must be aware of the consequences in their community and their local schools.
Bob Wright
Co-founder, Autism Speaks
Because why should we let the Chief Science Officer have the actual word on what Autism Speaks thinks about an issue of science?  Why let a clear statement stand alone when one can leave the door open with “Scientific research has not directly connected autism to vaccines.”
And that was sad.  A sad move by Autism Speaks.  A sad move by Bob Wright.
But I’ve already written about that.  Why bring it up again now?  Well, because a reader here alerted me to the fact that Bob Wright and Autism Speaks have expunged the statement by their science officer. If one now goes to https://www.autismspeaks.org/science/policy-statements/information-about-vaccines-and-autism, one finds only Bob Wright’s statement:
AS backpedals on vaccines
I so want Autism Speaks to be an organization I could support.  And sometimes they seem to be moving in that direction.  But, in the end, they are still clinging to ideas like “vaccines cause autism”, ideas that cause a lot of harm within the autism communities.  And they also take a very stigmatizing approach to the discussion of autism, but that is another discussion.

Autism Speaks pretends to be a science driven organization, but they just aren’t.  The founder is the founder and his opinion means more than the results of scientific studies as expressed by their own Chief Science Officer.

By Matt Carey