Autism services: questions the next IACC should address part 1

14 Jan

Take a look at the original law that set up the structure for how the U.S. coordinates autism research: public law 109-416 (sometimes called the “combating autism act”) and you will find paragraphs like:

(5) develop and annually update a strategic plan for the conduct of, and support for, autism spectrum disorder research, including proposed budgetary requirements

Now take a look at the wording of public law 113-157 (what was called the “Autism Cares Act“)

(5) develop a strategic plan for the conduct of, and support for, autism spectrum disorder research, including as practicable for services and supports for individuals with an autism spectrum disorder and the families of such individuals, which shall include–

“(A) proposed budgetary requirements; and
“(B) recommendations to ensure that autism spectrum disorder research, and services and support activities to the extent practicable, of the Department of Health and Human Services and of other Federal departments and agencies are not unnecessarily duplicative;

See that whole bit about “including as practicable for services and supports for individuals with an autism spectrum disorder and the families of such individuals”? There’s a big emphasis on services in the new law and the next IACC will be addressing this in the future strategic plans.

There are so many areas of services that could use attention it is difficult to find one to single out as the first I’d like to see given attention. But I am going to say that services for autistic adults need more attention. With that I can predict that some people are thinking I’m saying jobs and independent living. And sadly some people don’t see that as important. But this is not what I’m focusing upon here. No, I’m thinking of what services are needed to make supportive living most appropriate for autistics. There is so much discussion of the unique and specific educational needs of autistics, especially in preschool, but there isn’t much discussion of what makes an appropriate placement for adults. If I’ve learned anything from observing many, many classrooms it’s that people with


By Matt Carey

London McCabe’s mother’s Google searches

3 Jan

London McCabe was a six year old autistic boy when he was killed by his mother when she threw him from a bridge on November 3rd. The mother claimed to have heard voices, setting the stage for an insanity plea. A family member states that they had been trying to get Mrs. McCabe committed for a year but it has also come out that she had been performing internet searches showing she was thinking of a murder before the act.

Mother May Have Planned Son’s Murder

“We do have some information that Ms. McCabe has searched the Internet to actually evaluate or maybe educate herself on the criminal process,” said Michelle Branam, Lincoln County District Attorney. “‘How to restore competency’ was a website that she had searched. She has searched ‘state hospital,’ ‘guilty but insane,’ ‘involuntary commitment;’ ‘not guilty by reason of insanity.’

Also, in Prosecutors: Woman planned to throw son off Yaquina Bay Bridge we hear a family member state that they had been trying to get Mrs. McCabe committed.

London’s uncle, Andy McCabe, told KATU that he didn’t think losing London could hurt any more than it does already, but knowing London’s mother may have been planning his death makes it hurt even more. He said his family had been trying to get her committed to the state hospital all year.

If the latter part is true then, yes, there’s a failure in the system. Clearly there’s a failure when a murder occurs. And we do need to be careful to respect and not stigmatize those with actual mental illness. But these internet searches by Mrs. McCabe do point to a conscious and planned act.


By Matt Carey

Alison Singer and David Amaral present at the IACC on AutismBrainNet

31 Dec

In July of 2014, David Amaral and Alison Singer presented to the IACC on a new initiative: AutismBrainNet. The idea is simple but difficult to discuss: we need people to consider planning on being tissue donors, specifically brain tissue donors. It’s the sort of decision one needs to come to in advance. Brain tissue can greatly help research efforts, but there is very little tissue available from autistics and their relatives.

Here is the presentation to the IACC:

From the AutismBrainNet website, here are instructions for procuring a brain donation. In other words, if one finds one’s self in the position of making a donation decision, here’s what to do–call the number given below.

Procedure for Procuring the Brain Donation
Process: The Autism BrainNet encourages families to tell medical personnel of their intention to donate upon the death of a family member. To help them, please call 1-877-333-0999 for instructions:
When you call, you will be connected with a staff member at the BrainNet site closest to you
The staff member at the site will act as a liaison between you and the family to coordinate the donation process
They will send you the protocols and a service agreement for reimbursement to sign prior to carrying out the procurement
The staff member will provide instructions on what to do with the brain following procurement and information on shipping
When the donation is complete, send an invoice for services to the BrainNet node directly (expect payment in 4 to 6 weeks); you will be provided with an address to send the invoice

Here is a longer presentation for the Simons Foundation (from this page).



By Matt Carey

Shannon Rosa: Why Do Autism “Experts” Say Such Awful Things?

31 Dec

The past few months has seen a number of instances of written and oral statements that are damaging to autistics. Over at Blogher, Shannon Rosa has an article up on “Why Do Autism “Experts” Say Such Awful Things?” Here’s the first paragraph, but the full article is well worth the read.

You want to break my heart? Show me the latest mainstream media piece about autism written by or featuring quotes from a non-autistic autism expert. Almost without exception, that expert is going to say something that self-righteously dehumanizes, endangers, invokes pity for, or degrades my autistic son. My beloved, delightful, innocent son—who has done nothing to deserve such scorn.

Unethical DAN doctor to be supervised by acupuncturist

31 Dec drusman1[1]

An Illinois doctor who subjects autistic children to “unwarranted, dangerous therapies” must have her work reviewed by an acupuncturist. The state medical board also fined Dr. Anju Usman $10,000, ordered her to take additional medical education classes, and placed her on probation for at least one year, as part of her plea agreement with state regulators.

The acupuncturist, Dr. Robert Charles Dumont, is a pediatrician, and a member of the faculty of the Integrative Medicine Department of Northwestern University School of Medicine. According to the consent decree, Usman “shall submit ten active patient charts on a quarterly basis” to Dumont. When asked if Usman is allowed to select which charts will be reviewed, a medical board spokesperson referred the reporter to the language in the consent decree.

Usman suggested to regulators the doctor who will be reviewing her charts, according to Usman’s attorney.

drusman

Usman is director of True Health Medical Center in Naperville, Illinois and owner of Pure Compounding Pharmacy. She a is regular presenter at Autism One, an annual gathering of vendors, providers, quasi-researchers and desperate parents.

The Illinois Department of Financial and Professional Regulation says Usman provided “medically unwarranted treatment that may potentially result in permanent disabling injuries” to a boy that Usman started seeing in the spring of 2002, when the child was not quite two years old. Records indicate Usman diagnosed the boy with a calcium-to-zinc imbalance, yeast, “dysbiosis”, low zinc, heavy metal toxicity, and abnormally high levels of aluminum, antimony, arsenic, cadmium, copper, lead, nickel, silver, tin, titanium and selenium. Usman prescribed chelation, a hormone modulator, and hyperbaric oxygen therapy, which regulators describe as an “extreme departure from rational medical judgment.”

The complaint against Usman was filed by the boy’s father in 2009. A year later, he sued Usman and Dr. Daniel Rossignol of Melbourne, Fla. for harming the child with “dangerous and unnecessary experimental treatments.” A Chicago-area lab, Doctor’s Data, was also sued. The plaintiff voluntarily dismissed the suit in 2014, but will reportedly reinstate it in 2015 or later.

Usman was the subject of a 2009 Chicago Tribune investigation into questionable medical practices aimed at treating autism. The article noted that Usman and Rossignol “are stars of Defeat Autism Now!, having trained thousands of clinicians…  They are listed on the group’s online clinician registry, a first stop for many parents of children with autism seeking alternative treatment.”

Usman’s name is also connected to the 2005 death of Tariq Nadama, a five-year-old boy who died at the hands of Dr. Roy Kerry. Usman diagnosed the boy with high aluminum levels, then referred him to Kerry, an ear-nose-throat specialist in Pennsylvania. Kerry treated the child for lead poisoning, even though his blood lead levels were below that which indicates the need for chelation.

Cross posted from Autism News Beat

Sally Burton-Hoyle’s IACC presentation: Teen Transition

22 Dec

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

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

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


By Matt Carey

Autistic adult restrained and sedated

5 Dec pascoe

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

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

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

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

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

pascoe

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


By Matt Carey

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