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Autistic Somali man denied return to Canada

21 Aug

If true, this is a travesty of justice.

According to a recent story in CBC news, a naturalized Canadian citizen has been stuck in Nairobi for three years. The man, Abdihakim Mohammed, is 25 years old, and autistic.

Here’s the story, in brief: Mr. Mohammed was born in Somalia and emigrated to Canada with his mother in 1990, at about age 6. He is a Canadian citizen. A psychiatrist recommended that he travel back to Somalia with his mother, with the idea that this might improve his communication and social skills.

His mother returned to Canada first, leaving Mr. Mohammed in Somalia. Fearing that he might lose his passport, she kept it in her possession. Officials in Canada took the passport on the grounds that it was in the possession of someone not the owner.

When Mr. Mohammed’s grandmother took him to Nairobi to try to send him back home, he was denied travel. His citizenship card was not enough to convince officials that he is who he claims to be. That was in 2006. He has been unable to leave Nairobi since.

In a classic catch-22, his mother can apply for a passport on his behalf if she can get a court order granting her guardianship. But, in order to do that, Mr. Mohammed must be present in Canada. So, she can bring him home to Canada if she can bring him before a court in Canada first.

Mr. Mohammed has offered to undergo DNA testing to prove his identity.

Note: I wrote a similar post a few days ago, but I managed to overwrite it with a different post. If you have a sense of deja vu, that is why.

IACC comment time: No more procrastinating!

21 Aug

If you are like me you have put off submitting comments to the IACC.

If you are like me you need a reminder.

If you are like me you are in danger of missing the deadline.

Any thoughts about autism research? Let them know. Let them know if you think they are doing a good job or a bad job. Let them know if you think they should put more or less effort into any area.

Let them know here.

You don’t have to answer all the questions. You don’t even really have to stick to their format (if you hit “continue a few times, you get to an they even have an “other information” question).

I was going to try to write this without referencing groups that have opinions I disagree with. However, here is a comment from the Age of Autism blog on the IACC:

Answering their questions made me ill. The idea that their research intiatives include “where do I turn for help” and “what does the future hold”. What a ridiculous drain and distraction from important things such as treatment and prevention.

“What the future holds” is the category for adults with autism. Only 5% of research funding goes towards such research.

Even if the research funding wasn’t that small:

If you feel, like I do, that research into areas such as services for autistic adolescents and adults are important. If you feel that there is room for anything beyond just “treatment and prevention”. If you don’t want your opinion dismissed as “..a ridiculous drain and distraction from important things…”, the time to be heard is now.


It only takes a minute.

Read this article in O magazine

21 Aug

You read that right, I am sending people to read an article in Oprah Winfrey’s “O” magazine.

I’ve been waiting for the article, An Inconvenient Youth: Raising Children with Autism to appear online since reading some discussion about it on the net.

I am happily surprised that Oprah’s magazine would have such an article, given her support for a certain celebrity autism “advocate”.

That out of the way, the story is really worth the time to read it. It isn’t perfect, but, hey nothing (and that includes my pieces) is.

Here are some quotes:

Accepting the “A word” requires a learning curve. “You graduate to it,” says Erin. “Because this is about: Let’s call it what it is, let’s deal with it together.”

and,

And that leads to a bigger issue—one that really burns this group: the implication that accepting your child’s autism is not okay….The simple fact is that not all autistic kids can “recover.” “We need to reexamine what it means to be a successful adult,” says Erin. “To me, now, a successful adult is a functional adult.

and

At this point, however, society still has a long way to go in terms of tolerating people who behave in unfamiliar ways.

Lisa Jo Rudy at autism.about.com has already blogged this. I am very interested in hearing other people’s opinions.

Schizophrenic Man Terrifies Kids at Party

20 Aug

What image came to your mind when you read “Schizophrenic Man Terrifies Kids at Party”.

Well, you can watch if you’re brave enough (see below)

I could easily see this being done with “Autistic Man (or Woman) Terrifies Kids at Party”.

It isn’t right to stigmatize autistics. It isn’t right to stigmatize people with psychoses.

This isn’t to say that there aren’t challenges for schizophrenics or autistics. This isn’t to say that there aren’t challenges for loved ones of schizophrenics or autistics.

But why add to the challenges with stigma?

ASA-York billboard to come down

20 Aug

Just got this story in my inbox: After objections, autism billboard coming down.

As has been discussed here and elsewhere, ASA-York had a billboard that, well, was offensive to many autistics.

“It seems to send a message that we aren’t fully present in our own bodies,” said Ari Ne’eman, president of the Autistic Self Advocacy Network. Autism York might have been shooting for an “edgy” message, but its billboard was eerily reminiscent of the NYU Child Study Center’s ransom-note-style advertising campaign in 2007, Ne’eman said.

ASA-York has agreed to remove the billboard:

Autism York has agreed to take down a controversial billboard on Route 30 after disability rights advocates said the sign unfairly compares autistic people to kidnapping victims.

I appreciate them pulling the billboard.

Autistic Rose Gardeners

19 Aug

This is the kind of news story I like to read: Program helps the jobless and people with autism.

This came out of some sadness: Connecticut’s last rose farm had to shut down do to competition from overseas. But, now they are reopening:

The renewed effort at the rose farm is the initial project of a new program called Growing Possibilities. The plan is to create a model that will show just how valuable those with developmental disabilities can be in the workforce.

The plan seems ambitious on multiple levels. Here’s another quote from the story:

“It’s kind of a marriage of people that want to work with an industry that has been facing challenges here,” said Thomas Fanning, president and chief executive of Ability Beyond Disability, a Bethel-based non-profit support agency Ability Beyond Disability is providing the funds to reopen the farm, and plans to raise $1.6 million to run it over the next two years, employing 15 people on the autism spectrum. The goal is to achieve profitability after two years and sustain it, Fanning said.

The organizations involved, the Connecticut Autism Spectrum Resource Center and Ability Beyond Disability appear pretty reasonable on a quick scan through their websites.

I really like to see more programs like this: programs involving adolescents and adults. We need more (much more) of this in our world.

Rex Reed is just plain ignorant

19 Aug

OK, he’s also insulting.

Mr. Reed, movie critic, has reviewed the movie “Adam”.

I know I am late out of the gate on this one. Mr. Reed’s review was a few weeks ago, and many others have discussed it on blogs and discussion groups (for example, abfh’s Rex Reed Spouts Disgusting Bigotry and one of the discussions on wrongplanet) . In the end I just had to write something.

Here is a quote from Mr. Reed’s review:

Far from just another exotic Disease of the Week, Asperger’s is an incurable neurological disorder similar to autism that turns outwardly normal-looking people into high-class idiot savants. I know at least two people with Asperger’s. They are incapable of thinking of anyone or anything outside of themselves. Challenged by social interactions and given to obsessive routines that revolve around a single subject of interest, they do not like to be touched, they feel incapable of explaining things and they cannot cope with people in general. Emotionally blocked, they say things that hurt and sting without meaning to be rude, and are weak at understanding, receiving or exchanging the emotions of others. They cannot look you in the eye. Adam is a fascinating study of a rare affliction in which all of these qualities are evident, in carefully researched scenes that are humorous and touching. It is lethal to get involved romantically with any person with Asperger’s syndrome, since they care nothing about other people’s feelings, needs or priorities. Almost without exception, they leave you perplexed, riddled with doubt and totally depressed.

For emphasis, here is one of Mr. Reed’s statements:

“Emotionally blocked, they say things that hurt and sting without meaning to be rude, and are weak at understanding, receiving or exchanging the emotions of others”

I don’t know if Mr. Reed is “emotionally blocked” or if he “meant” to be rude. I know that he has clearly demonstrated the ability to say things that hurt and sting.

Probably the worst statement (and that is saying a lot) is where Mr. Reed asserts: “It is lethal to get involved romantically with any person with Asperger’s syndrome”

What was he (and his editor) thinking when the published that bit of ignorant tripe? “Lethal”?

Let me take Mr. Reed’s concluding statement and change it into one of my own:

Mr. Reed has left me perplexed (how could he make such ignorant and hurtful statements), riddled with doubt (as to why his editor let that paragraph get published) and totally depressed (as to how far society has to go before it gives autistics proper respect).

You can email the editors at the New York Observer at editorial@observer.com. If you try calling, good luck with that general mailbox. Does anyone ever pick that up?

Jenny McCarthy: I’d like to see some action behind those words

18 Aug

Jenny McCarthy is on the cover of the latest Cookie Magazine. As part of her interview, she asserts that she is “pro safe vaccine”, not anti vaccine.

Now McCarthy, along with her boyfriend, actor Jim Carrey, serves on the board of directors of Generation Rescue, an advocacy and research organization that calls for eliminating toxins in vaccines and for delaying shot schedules.

Notice “delaying” shot schedules.

Another quote, talking about her own experiences:

Going over his medical history now, she sees a link between a series of ear infections, a severe case of eczema, and a hepatitis-B booster shot. “Looking back, I’d say, ‘God, if a kid is having more than seven ear infections in a year and he’s got eczema, there are some issues here—his immune system is obviously under attack, and we need to put him in the sensitive category. Let’s just delay some of his shots,’ ” she says. “Not eliminate, delay.”

Again, note the phrease “Not eliminate, delay”.

This isn’t exactly new. The Generation Rescue website page on vaccines tells parents to “consder delaying vaccines”. As near as I can tell, GR has had a statement like this since the vaccines page was first put up.

But here is where actions and words part company for both Jenny McCarthy and Generation Rescue. They have “recommended” vaccine schedules. Their “favorite” schedule, included in their paragraph on “consider delaying” vaccines, states flat out: no live virus vaccines. I.e. no Measles, Mumps, Rubella or Varicella (chicken pox).

That’s not “delay” that’s “eliminate”.

Let’s compare the GR alternative schedules to the CDC recommended schedule, shall we?

The childhood schedule includes vaccinations against 15 diseases:

Hepatitis B
Rotavirus
Diptheria
Tetanus
Pertussis
Haemophilus influenzae type b
Pneumococcal
Polio
Influenza
Measles
Mumps
Rubella
Varicella
Hepatitis A
Meningococcal

Now let’s check GR, Jenny McCarthy’s organization, and their recommended schedules:

First, GR’s “favorite” schedule only has protection against 4 diseases.

Pertussis
Diptheria
Tetanus
and, Polio

Again, that’s not “delay” that’s “eliminate”.

For their second option, GR claims you can “turn back the clock” and use the 1983 schedule. I don’t know how anyone could think that is supposed to be a “delay” in shots. Here’s the count (6 diseases covered):

Diptheria
Tetanus
Pertussis
Polio
Measles
Mumps
Rubella

As the third option, Jenny McCarthy’s organization suggests you “go Danish” and use the Denmark schedule (7 diseases):

Diptheria
Tetanus
Pertussis
Haemophilus influenzae type b
Polio
Measles
Mumps
Rubella

Jenny McCarthy *says* she is promoting “delaying” vaccines. Her actions speak much louder than her words.

If you want to say you are for “delaying” vaccines, then change your website. Pretty simple.

Of course, when you do, I’d love to see the science showing that the delayed schedule you pick is safer than the current one.

Autism Epidemic? Not in the NSCH data

17 Aug

There is an epidemic of vaccine-induced autism. Must be, we’ve been hearing this for about 10 years. During that time, many datasets have been manipulated to “prove” the epidemic. The two datasets that come to mind most readily are the U.S. special education data (IDEA data) and the California Department of Developmental Services data (CDDS). Neither were intended for true epidemiology.

That intro should be a warning: be prepared for more armchair epidemiology. Interested in the short answer? A new dataset is out that just doesn’t fit the idea of an “epidemic” of vaccine induced autism. No huge increases in autism counts.

The new dataset available is the 2007 National Survey of Children’s Health. The NSCH data includes questions about autism. So it should come as no surprise that it was spun into support for the “epidemic” already.

As a bit of background, let’s start with the US special education data. It’s a favorite dataset for those pushing the epidemic. Here’s a graph hosted on the Thoughtfulhouse website (click to enlarge):

special ed data supposedly showing an epidemic

special ed data supposedly showing an epidemic

Wow. That’s an epidemic. 16 year olds have an “incidence” (their word) of 0.4 per 10,000 while younger kids are at nearly 20? That’s an increase of 50 times. Impressive. Until we look at the NSCH data.

By coincidence the Thoughfulhouse data are from 2007, the same year as the NSCH data. What happens if we plot the NSCH data like the graph above? Again, click to enlarge. Sorry, I couldn’t format it to look just like the ThoughtfulHouse graph.

National Child Health Survey data on autism

National Child Health Survey data on autism

Doesn’t even look close to the data on the Thoughtfulhouse website. First, the “incidence” numbers for around age 16–0.4 for ThoughtfulHouse’s graph, 93 for the NSCH data. I wanted to graph the data on the same graph, but the newer, NSCH numbers just dwarf the IDEA numbers that ThoughfulHouse used.

Besides the difference in overall magnitude, what about the “epidemic”. What about the huge increases in autism “incidence” or “prevalence”. Numbers like 273% increase, or more, in autism are commonly quoted for the increase in autism diagnoses in the 1990’s. Well, those increases just aren’t observed in the NSCH data. Keep in mind, the 17 year olds in the NSCH data graph were born in 1990. There just isn’t the dramatic increase in an autism count in those data.

There is a a much smaller trend of increased autism count when moving from about age 17 down to about 12. The “incidence” increasing by about 40%. That’s a big number. Not hundreds of percent, but a big number.

The “incidence” goes down for younger kids–which must be partially or completely due to the average age of diagnosis being about 5. There is at least one blogger who is “sparking the debate” that this could be a sign that the removal of thimerosal has resulted in lower autism counts. The same blogger has stated at different times that we should have already seen any drop in the CDDS data and, later, that we won’t be able to see any trends until sometime well past 2010. That’s covering your bases! Either we saw it already, we are seeing it now, or we need to wait until the future to see it.

But, back to the NSCH data. Pretty much, those data are flat for birth year 1995 to 2003. Noisy but flat. That’s when the “epidemic” was in full force.

Or, another way to put it–there is no good evidence of an epidemic in the NSCH data.

Working together to advance respect for autistics

17 Aug

It was over before I knew it had happened. And it ended well.

Joe over at the Club 166 blog spotted a billboard that was, well, rather reminiscent of the “Ransom Notes” campaign billboards that caused a great stir in the autism communities. It appears that Joe spotted this billboard in Lancaster County, Pennsylvania:

York ASA Billboard

York ASA Billboard

Well, Joe blogged it as Could We Have A Little Originality, Please. That was Friday. He then sent the following letter on Sunday.

Dear Sirs/Madams:

As the father of a child on the autism spectrum, I am writing to express concern about the York, PA ASA chapter’s billboard campaign that associates autism with being kidnapped. I happened to notice one of your billboards while taking a vacation in Pennsylvania. This campaign is reminiscent of the 2007 Ransom Notes campaign that was undertaken (and subsequently removed) by the NYU Child Study Center in New York City.

Comparing people with autism to those who are kidnapped is not only factually wrong (my son hasn’t been kidnapped, he’s right here in front of me), but is demeaning and offensive to those who are autistic. Rather than “creating awareness”, I can only see the logical end result of such an ad campaign be one of creating fear, misunderstanding, and disrespect towards those who are autistic.

In Medieval folklore the image of a changeling was used to describe children with then misunderstood medical disorders or developmental disabilities. Fairies or trolls were thought to have kidnapped the “normal child” and left the changeling in its place. One would think that in the 21st century we could get past such folklore, and deal with reality.

Putting up ads that show such disrespect towards autistics will certainly not result in greater acceptance and integration in either the school environment or the community. As an organization that ostensibly has been set up to serve the needs of the autistic community, I urge you to immediately remove the ads. Furthermore, I strongly encourage you to consult with autistic self advocates before formulating future ad campaigns.

Thank you for your time, and I hope to hear from you soon.

Sincerely,

And this led to a “Quick Resolution“.

Along the way, Joe had help from abfh, including her “end of week stupid roundup” post.

Also, ASAN got involved. Here is Ari Ne’eman’s letter discussing what happened:

Hello,

Only a few hours after our letter and thanks to the hard work of bloggers like Joe at Club 166, Abfh, Cracked Mirror in Shalott and others who wrote in and called about the billboard campaign, ASA-York has agreed to pull the billboards. This is a sign of the importance of working together as a community to address issues like this. A year and a half ago, it took the combined strength of 21 disability organizations from across the country to have our voices be heard on a billboard campaign not dissimilar to this one. Today, our community’s reputation for action and ethics has grown to the point where we can bring about change much more rapidly. This should serve as a reminder of the importance of a strong, united Autistic community with a clear moral vision of a better future for Autistic people. Small victories like this remind us of what we can accomplish by working as one community on issues of every kind and size. Thank you to everyone who took action and in particular to the members of the blogosphere who first rallied the community around this. I encourage people to write to ASA-York’s President Amy Wallace at Amy Wallace amywallace3@gmail.com to express your appreciation for their swift action to remove unethical advertising and to encourage them to work with the Autistic community in the future.

Regards,
Ari Ne’eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
732.763.5530

I’m glad to see this advocacy effort pay off so amicably and so quickly.

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