Archive by Author

Autistic Youth Coming of Age

13 Aug

Here’s what I call a good use of stimulus money in the US. Dr. Paul Shattuck of Washington University in St. Louis has a NIMH grant to study adolescents with diverse socioeconomic and racial backgrounds.

The study will focus on

Outlining changes in service needs, service use, and health insurance coverage as youths with ASD enter adulthood

Identifying resources and barriers associated with use of, and continuity in, health care and other services

Detailing young adult outcomes (such as employment, housing, independent living, health, and community participation) and examining how these may be linked with prior measures of need, service use, resources, and barriers.

This is the kind of study that can really help autistic adolescents and young adults.

This is the kind of study those of us with young children need to see.

By the way, I am only assuming the funding for this project came from the Stimulus package funding. Either way, it is a good research topic. I have a lot of respect for Dr. Shattuck at Washington University.

NY Times: Disabled Students Spanked More

12 Aug

An article in the NY Times from two days ago reports on a study that shows that in states where corporal punishment is allowed, disabled students are punished more than their non-disabled peers.

This is based on a study by Human Rights Watch and the American Civil Liberties Union.

The report, based on federal Department of Education data, said that of the 223,190 public school students nationwide who were paddled during the 2006-7 school year, at least 41,972, or about 19 percent, were students with disabilities, who make up 14 percent of all students.


The study is online.

In one state, Tennessee, disabled students were punished more than twice as often as their non-disabled peers.

Two examples from the report:

The ACLU and Human Rights Watch received numerous reports of students who were punished for the consequences of their disability. Many of the cases involved students with autism, who were physically punished for exhibiting behaviors common to children on the autism spectrum. Some parents reported that school staff did not take their children’s conditions under consideration when administering discipline. Students are being beaten for behavior they simply cannot control, or cannot reasonably be expected to control, a grossly disproportionate and fundamentally demeaning response to the child’s condition.

and

Despite this medical and scientific evidence, the ACLU and Human Rights Watch received numerous reports of children with autism who were punished because of their behavior. Sharon H., the mother of a girl with autism in Georgia, described her daughter’s experience: “One time, she was just sitting, rocking side-by-side in the gym. That’s what autistic kids do. She was five at the time. The fourth-grade teacher grabbed her and dragged her across the floor.”[136] Another kindergarten girl with autism in Georgia was thrown into a wall after she started rocking and spinning at the same time.[137]

Much of these statements are anecdotal and unanswered by the school system. And, yet, they are very serious and, let’s face it, not unlike what we have all heard (and some seen firsthand).

Autism Omnibus: Snyder appeal denied

12 Aug

The appeals for the MMR phase of the Omnibus are now concluded: all three were denied.

The Autism Omnibus Proceeding is the way the “Vaccine Court” has taken on the task of deciding the merit of the theory that autism is a vaccine injury. The petitioners had two basic theories: (a) the MMR vaccine can cause autism and (b) the vaccine preservative thimerosal can cause autism.

Three hearings were heard for each theory. In each hearing a single individual took the role of a “test case”. So, each hearing not only represented the case of a single child, but also presented “general causation” evidence as to whether MMR or thimerosal could cause autism.

The six test cases (three MMR and three thimerosal) have been heard. The MMR cases were ruled upon, and all three were denied. All three were appealed. And, now, all three appeals have been denied.

Here is the conclusion of the appeal for the last of the MMR test cases, that of Colten Snyder:

As the special master’s decision makes clear, Colten, and by extension, his family, have dealt with significant adversity for many years, and, like the special master, the court is very sympathetic to their circumstances. However, the court cannot be ruled by emotion and base its determination solely upon the adversity endured by petitioners’ family. Moreover, it is not the task of this court to determine whether vaccines cause autism or other neurodevelopmental disorders. Rather, the court must decide whether the special master, considering the record as a whole, rendered a decision that was arbitrary, capricious, an abuse of discretion, or otherwise not in accordance with the law. She did not. Her decision was entirely rational and fully supported by the record. Thus, the court DENIES petitioners’ motion for review. Pursuant to Vaccine Rule 30(a), the clerk is directed to enter judgment in accordance with this decision.

Very solid decision. The appeal was denied.

Looking back through the document one finds that the Judge noted that the case for MMR causing an injury was clearly not supported, and that the Special Master did not make an error in her decision:

The court finds no error in the special master’s findings. The special master’s conclusion that petitioners did not present a biologically plausible medical theory is clearly supported by the record. She found that the various aspects of petitioners’ theory were not scientifically sound and that the lynchpin of their theory was wholly unreliable. See id. at *87-93 (petitioners’ theory),
116-35 (Unigenetics’ reliability). Next, the special master’s conclusion that petitioners had not established a logical sequence of cause and effect is also supported by the record.

In a statement reminiscent of the Cedillo hearing (first MMR test case) the Judge noted that the medical records show that the “onset of symptoms” did not occur when the petitioners thought:

She [the special master] found that based on the medical records, the onset of Colten’s symptoms did not occur at the time suggested by petitioners.

It is worth reading or skimming the decision. It is a good summary of the case and the evidence presented. I don’t want to quote much more of the document here, with this exception.

Petitioners’ charge–that the special master feared a public backlash against vaccines if she ruled in their favor–is preposterous. There is not a shred of evidence to support petitioners’ claim;70 it rests solely on petitioners’ speculation. Merely because the special master found that petitioners did not carry their burden of proof does not diminish her integrity or render her decision unsupported. Claims of error by a losing party against a decision maker are hardly unusual, but should be grounded in reality.

One thing that bothered me greatly was the implication in the appeals that the Special Masters were acting improperly out of some hidden motive such as trying to protect the vaccine program or fear of public backlash. Sometimes it is difficult for a lay person like myself to understand whether such arguments are expected and “just part of the game” or whether they are attempts to impugn the integrity of the Special Master. I have read enough comments on other blogs to see that many readers are willing to accept that members of the judiciary could act to deny children due process.

I’m glad the Judge in this appeal took the time to respond to these false allegations.

How well do parents accept their child’s ASD diagnosis

12 Aug

ResearchBlogging.orgHow well do we parents come to accept their child’s diagnosis of autism? If you wonder that, you may be interested in this paper out of Israel:

Resolution of the Diagnosis Among Parents of Children with Autism Spectrum Disorder: Associations with Child and Parent Characteristics

Resolution, or being resolved, is discussed as:

The process of coming to terms with a diagnosis for one’s child, that is, accepting and feeling resolved with respect to it, is a daunting challenge for most parents.

The authors found that 57% of their sample of parents were unresolved to their child’s diagnosis.

According to the paper, there are six subtype classifications that characterize lack of resolution:

Emotionally overwhelmed parents are those who re-experience the emotions they felt the day they received the diagnosis during the interview.

Angrily preoccupied parents are consumed by anger that they cannot let go (e.g., anger at the doctor who delivered the child or at the person who diagnosed him/her).

Neutralizing parents minimize the effect of the experience and their difficult emotions.

Depressed/passive parents seem sad and depressed during the interview and report having no hope for change in the future.

The cognitive distortions subtype describes parents who have distorted the information or feelings available to them about the child and the diagnosis. For example, they will show an unbalanced perception of the child, describing only her/his positive qualities, or will adopt an unrealistic view regarding the
child’s abilities and future.

Disorganized/ confused parents seem confused and incoherent and find it difficult to construct a narrative regarding the experience of receiving the diagnosis.

My guess is that Warrior Moms wouldn’t see themselves as falling into any of those categories. I would further guess that the researchers might not agree with the warrior mothers.

Back to the paper. How are the parents they studied fall into the categories?
Figure 2 (click to enlarge) from the paper shows how the unresolved parents fell into the different categories.

resolved_figure_2

The largest fraction of unresolved mothers were in the “emotionally overwhelmed” category, while fathers were split mostly between “emotionally overwhelmed” and “neutralizing” categories.

A couple of observations I found interesting.

First, naively, I would expect that the ability to “resolve” would be related to how “severe” the child’s autism is. This is not the case:

Our study also replicates past findings regarding the lack of association between maternal resolution and the diagnosed child’s characteristics including gender, chronological age, severity of symptoms, mental age, and daily living skills.

A second observation: I would also naively expect that parents would “resolve” more over time. Not true. By comparing their results to another recent study, the authors conclude that time doesn’t appear to help in achieving resolution:

The maternal resolution rates found in the current study are quite similar to those presented by Oppenheim et al. (2009), even though the mean duration of time since receiving the diagnosis was much longer in the current study (4 years and 4 months) compared to that in the first study (1 year and 10 months). This finding suggests that resolution status is not associated with the duration of time that elapsed since the child was diagnosed, at least for the time range included in the current study.

Parental resolution was not associated with age, gender or time since diagnosis for the child. Neither was it associated with financial impact or impact on siblings. Association was found for mothers in some areas:

Our hypothesis regarding the association between resolution and the impact of raising a child with a disability on the family was confirmed for mothers only. Compared to resolved mothers, unresolved mothers reported a higher perceived negative impact of the diagnosed child on some aspects of family life such as the family’s social life and negative feelings about parenting and marriage.

Full text of the paper is available as pdf.

My guess is that many will greet this study with some variation of “I won’t resolve to autism; I won’t give up”.

Resolution is not giving up. Resolution is accepting the reality of you and your child’s situation. Resolution does not mean one doesn’t fight to improve your own life or that of your child.

The authors conclude the paper with what many would see as an important observation (if not one covered by the study itself):

Rather, within the constraints of the child’s disability, parents may play an important role in shaping their relationships with their child and his/her well-being. Thus, interventions focused on enhancing parental resolution are needed in order to optimize the well-being of all family members.

Milshtein S, Yirmiya N, Oppenheim D, Koren-Karie N, Levi S. (2009). Resolution of the Diagnosis Among Parents of Children with Autism Spectrum Disorder: Associations with Child and Parent Characteristics. Journal of Autism and Developmental Disorders : DOI 10.1007/s10803-009-0837-x

Moving Toward a New Consensus Prevalence of 1% or Higher

12 Aug

When I first started reading autism blogs, I was very impressed by many of the writers on what has become the Autism Hub. Amongst them, Joseph of the Natural Variation – Autism Blog.

There are a lot of armchair epidemiologists in the autism world. Joseph has always impressed me with his careful and thorough approach.

One blog post of his is where I got the title for this post: Moving Toward a New Consensus Prevalence of 1% or Higher. That post impressed me then. It impresses me even more now.

Take a look at that blog post. It is from February of 2007. Here’s a line from his intro:

The current consensus prevalence of ASD is roughly 1 in 166 or 60 in 10,000, as widely known. I believe this is still an underestimate.

Here’s a later paragraph:

Nevertheless, it appears that when ASD is screened thoroughly in a population, or when there’s a lot of awareness and good ascertainment, prevalence is found to be closer to 1%. This is not new. The following is what Lorna Wing and David Potter said on the subject as early as 1999.

Why bring it up now? Because Joseph is (once again) proven correct. The “new” consensus is about 1% or more.

The National Survey of Children’s Health shows about 1% of children aged 2-17 currently have an Autism or Asperger Syndrome diagnosis. The rumor mill has it that the CDC will release a report with about 1% soon as well.

Anyone surprised? At the least, is anyone surprised that the “official” numbers may be going up? It has been long recognized and discussed that the “official” CDC numbers are an under estimate. The regional variations alone show that to be the case (with the autism “rate” varying by about a factor of 3 between Alabama and New Jersey).

Again, lifting liberally from Joseph’s blog post: he quotes Lorna Wing and David Potter from…1999. Yep. 10 years ago.

Because we concentrated on the children with learning disabilities (IQ under 70) we saw very few with the pattern described by Asperger. We had to wait for the study by Christopher Gillberg in Gothenberg to find out how many children with IQ of 70 and above were also in the autistic spectrum. As described above, combining the results of these two studies gave an overall prevalence rate for the whole autistic spectrum, including those with the most subtle manifestations, of 91 per 10,000 – nearly 1% of the general population.

and,

Kadesjö et al (1999) report a study in Karlstad, a Swedish town. Although this was small scale it was very intensive (over 50% of the 7 year old children seen and assessed personally by the first author). The study found a prevalence for all autistic spectrum disorders for all levels of IQ, of 1.21%!!! Children were followed up four years later and had the diagnoses confirmed.

Joseph also listed the following studies in his post:


About 1% of children in the South Thames region have an autistic spectrum disorder

and


Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations by E. Fombonne, et al.. This 2006 study showed 1.076%.

More recently, we have the study by Simon Baron-Cohen’s group that showed a prevalence about 1.5%

At the time that I started reading autism blogs there was a recurring theme. Every three months the California Department of Developmental Services would publish their latest data. Rick Rollens would put out comments for the press and David Kirby would blog it, both concluding that the data showed evidence of an “epidemic”. As I recall, one quarter there were simultaneous claims of “See the autism rate went up, there’s an epidemic” and “see the autism rate went down, there’s an epidemic”. Every quarter, bloggers like Jospeh, D’oC and Prometheus (and others) would debunk the claims of epidemic.

Little has changed except that the CDDS isn’t publishing quarterly reports. Now we have more infrequent reports on autism prevalence, so we have to do the debunking less often.

The real question here is whether the prevalence of autism is really increasing. It is a very good question. It just isn’t one that we can answer with the data we have. That won’t stop people from claiming they have proof of an “epidemic”.

Eunice Kennedy Schriver passes

11 Aug

Eunice Kennedy Schriver has passed away. She was a part of the Kennedy clan as sister to Senator Ted Kennedy and President John F. Kennedy. She was also an advocate for the intellectually disabled. At a time when families, especially prominent families, hid their disabled relatives, she went public about her sister, Rosemary. She founded the Special Olympics.

Her family has issued the following statement:

She was the light of our lives, a mother, wife, grandmother, sister and aunt who taught us by example and with passion what it means to live a faith-driven life of love and service to others

President Obama is quoted as saying:

“But above all, she will be remembered as the founder of the Special Olympics, as a champion for people with intellectual disabilities, and as an extraordinary woman who, as much as anyone, taught our nation — and our world — that no physical or mental barrier can restrain the power of the human spirit”

CNN has a quote Mrs. Schriver made before her passing on her work with the intellectually disabled.

Most people believe I spent my whole life really interested in only one thing and that one thing is working to make the world a better place for people with intellectual disabilities.

“As important as it has been, it is not the whole story of my life. My life is about being lucky as a child to be raised by parents who loved me and made me believe in possibilities. It is also about being lucky to have had these extraordinary children. … It is also about being especially lucky to have a wonderful husband.”

Autism Omnibus: Cedillo appeal denied

11 Aug

In the Autism Omnibus Proceeding there were three “test case” hearings to decide if autism can be considered a “vaccine injury” due to MMR. In all three cases, the special masters (judges) decided that there wasn’t enough evidence. In fact, it “wasn’t even close”.

All three have been appealed. The first appeal was denied a few weeks ago.

The second appeal decision is in, for the test case that was the hearing for Michelle Cedillo. This case had the most “general causation” information and so was the most complicated.

As with the Hazelhurst appeal document, this document is a very good summary of the hearing.

Here is the summary of the appeal arguments:

The Cedillos assert seven arguments in their motion for review to show that the Special Master’s decision is arbitrary, capricious, an abuse of discretion, and contrary to law: (1) A panel of three Special Masters should not have heard the general causation evidence; (2) The Special Masters should not have allowed the last-minute expert reports and testimony of Dr. Stephen Bustin; (3) The Special Master improperly discounted the medical diagnoses and opinions of Michelle Cedillo’s treating physicians; (4) The Special Master improperly ignored concessions made by Respondent’s expert witnesses; (5) The Special Master ignored important aspects of Michelle Cedillo’s evidence; (6) The Special Master abused his discretion by refusing to consider important post-hearing evidence; and (7) the Special Master’s decision was contrary to law. Petitioners’ arguments four and five include multiple sub-parts, specifically raising the testimony of six expert witnesses and seven substantive areas of Petitioners’ evidence that the Special Master allegedly mis-evaluated.

Probably the key to the entire MMR-causes-autism idea, and the first subject that the appeals judge covered was the question of whether measles virus can be considered to persist in intestinal tissue. The petitioners case in this respect depends heavily on studies by Dr. Wakefields group and samples taken from Michelle Cedillo which both rely on the Unigenetics laboratory of Dr. O’Leary.

Without the test results of the Unigenetics Laboratory, Petitioners have lost a cornerstone to their causation theory. The fact that Petitioners did not prove the existence of any persistent vaccine-strain measles in Michelle Cedillo’s body leaves Petitioners well short of meeting their prima facie case that the MMR vaccine played any role in causing Michelle’s autism. Under these circumstances, Petitioners failed to meet their burden of proof by a preponderance of the evidence, and thus the burden never shifted to Respondent to rebut Petitioners’ proof. See Althen, 418 F.3d at 1278. The Special Master’s decision regarding the Uhlmann Study and the Unigenetics testing is reasonable in all respects, and could not in any sense be regarded as arbitrary, capricious, or an abuse of discretion.

Since the MMR test cases were heard, another very important study has been published, further showing that there is a lack of persistent measles virus in children with autism and bowel problems.

Without going into the details on the other points in the decision, we can jump to the conclusion and see that it is succinct and clear:

The issue before our Court is not to determine the causes of autism. The Court can only hope that medical professionals succeed in identifying the causes and developing a cure for this tragic disease. Rather, the Court’s task is to weigh the Special Master’s February 12, 2009 decision under the applicable review standards of the Vaccine Act, and determine whether it should affirm or modify the decision to any extent. After performing this review, the Court is satisfied that the Special Master’s decision is rational and reasonable in all respects, and is in accordance with law. For the reasons addressed above, the Special Master’s decision is AFFIRMED.

Or, to put it more succinctly:

Petitioners still have the burden of proving their claims by a preponderance of the evidence, and the Special Master reasonably concluded that they failed to do so.

There is still one more MMR appeal in the works. Given the results of the first two, my guess is that the attorneys are preparing for the next step in the journey towards a civil case.

Without more evidence to support their case, I would have serious doubts about the MMR hypothesis winning in a civil trial. Since the omnibus hearing, there is more good evidence against the MMR hypothesis and the plaintiffs will face more stringent evidence rules.

Autism and Vaccines: IACC and NVAC met on July 15

8 Aug

Do vaccines cause autism? That is a question which dominates much time (some would say too much time) on the Interagency Autism Coordinating Committee (IACC). The last full meeting (July 15) was partially devoted to the question, with a presentation by the National Vaccine Advisory Committee (NVAC).

I try to listen to as much of the IACC as I can. I figured this meeting would be a big one, with time devoted to the vaccine causation question and all.

But this time I just didn’t have the time. When I called in the vaccine presentation was already over. After the meeting I cringed waiting to hear the vaccine spin from certain groups. Oddly, the vaccines-cause-autism groups were silent on the issue. The only discussion I have read so far about the meeting involves the fact that the meeting ended early and some people weren’t able to make public comments (observations about this at the bottom of this post)

One reason I was interested in what NVAC had to say is that people like David Kirby have been cherry picking the NVAC statements and, through artful omissions, helping to keep the epidemic alive.

For anyone who doesn’t know: David Kirby wrote a book: Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy. As time has gone on, the phrases “mercury in vaccines” and “epidemic” are just conveniently left out of Mr. Kirby’s blog posts. That doesn’t mean he has stopped supporting the epidemic notion. He has always had a sort of passive-aggressive approach to the epidemic. He’s just trying to “spark a national debate.” Well, that dodge doesn’t work with me.

Recently Mr. Kirby hasrelied on statements by the NVAC to make his case. In a recent blog post, he opened with:

It is not accurate for members of the media to report that the link between vaccines and autism has been “disproven.” This is especially true in light of recent news from the National Vaccine Advisory Committee – and a series of other news items from the Federal Court of Claims, Federal health agencies, leading universities and top autism researchers around the country.

Given this background, I was expecting the IACC/NVAC meeting to be full of talk about epidemics and mercury…at least from the post-meeting commentary.

Luckily, someone sent me the slides from the meeting.

So, with that long introduction, let’s look at the quotes NVAC used for their own discussion of vaccines and autism in the IACC meeting. Shall we?

“The NVAC also notes the public engagement process identified public concern (Appendix 2) related to thimerosal, particularly with respect to autism/ASD. The NVAC is assured by the many epidemiological studies of the effects of mercury exposure done in a variety of populations, which have demonstrated that thimerosal in vaccines is not associated with autism spectrum disorders in the general population.”

…a small and specific subset of the general population (such as those with mitochondrial dysfunction) may be at elevated risk of reduced neurological functioning, possibly including developing ASD, subsequent to vaccination.

In the context of vaccination research, the ASD clinical subset of particular interest is regressive autism

Vaccination almost certainly does not account for the recent rise in ASD diagnoses; however, public concern regarding vaccines and autism coupled with the prevalence and severity of ASD warrant additional study in well defined subpopulations.

(note, there are four more quotes on page 30, in the “additional slides” section)

I guess I shouldn’t be surprised no one from the vaccines-cause-autism groups was blogging this. It’s pretty clear that NVAC doesn’t support the idea of a vaccine caused epidemic of autism–either through thimerosal or some other means. Not something the vaccines-cause-autism crowd wants to advertise.

As long as we are here, it is worth noting that there was a lot more discussed in that meeting aside from vaccines.

There was a presentation about the Autism Centers of Excellence (ACE). These centers were created as large investments to build a long term autism research infrastructure.

There was discussion of the National Database for Autism Research (NDAR). This database is collecting all sorts of information (genetic, behavioral, diagnostic, etc.) for researchers to share. There was discussion about the cost to enter data into the database (about $5k per research project) and whether this would be an impediment to collecting information. Should NIH make separate small grants to cover the cost of data entry into NDAR? There was discussion comparing NDAR to IAN and whether these two databases could be linked. There was a suggestion that perhaps parents could add data to NDAR, not just researchers. (I’m skeptical that can be done well.) There was a very critical comment that NDAR has been “almost ready” to go for many years.

One very interesting part of the IACC meeting was the discussion of how autism research funding is spent. This was the basis for a blog post I made showing how research on autistic adults is getting a very small fraction of the total.

Most (if not all) of the blogging on this IACC meeting has focused on the end: the was time for public comments. I wish I had known this was going to become a subject of contention; I would have made some notes. As it is, my recollection is that 4 people wanted to give public comments: Jim Moody (attorney and member of SafeMinds), Ari Ne’eman (president of ASAN), and two families with autistic children.

The meeting ended early, and the only person present to make his public comment was Mr. Moody. They called for the other people to comment, but, as I said, they weren’t present.

This is now being played up as excluding families by rushing through the agenda. I was surprised that they ended so early, but I didn’t get the impression they were rushing though it. I also note that it wasn’t just families who didn’t get to speak, Mr. Ne’eman didn’t get his opportunity either.

What I haven’t read is anyone giving an actual solution to the problem of what happens if they finish the agenda early.

Here’s my suggestion: perhaps Dr. Della Hann*as Executive Secretary of the IACC could see that cell phone numbers are taken from the commenters. When it looks like the meeting is ending, someone could send those scheduled to comment a text message via email.

Who knows, there is probably some government rule that bars doing that. But this strikes me as an accommodation issue. Autistics, especially kids, may not be able to sit through the hours of the meeting waiting for their 5 minutes to make public comment.

*There is a misunderstanding being propagated on the blogs lately. For anyone interested, her surname is Hann, not Hamm.

Jenny McCarthy needs to learn: autistic is not psychotic or crazy

6 Aug

Last year Amanda Peet had a story in Cookie Magazine. She came out very pro-vaccine. Jenny McCarthy “jumped” on the story (delayed to be coincidental with Jenny McCarthy’s need for publicity).

This year, Cookie Magazine has a story with Jenny McCarthy. There is a lot bad in there. I am saving the worst for last (you can skip to the bottom if you want).

As to be expected in a magazine article about a celebrity, Ms. McCarthy is pushing her own business interests. In this case, her educational DVD collection:

“Through a series of entertaining vignettes featuring a cast of kids (including Evan), puppets, and dolls, the DVDs model correct social behavior and tackle everything from sharing and patience to maintaining conversations with friends to sibling rivalry. “Any parent will tell you that her kid watches a show and imitates it,” McCarthy says of her inspiration for the idea.”

I find that statement really strange for educational videos targeting autistic kids. I can think of a number of parents of autistic kids who would disagree with “Any parent will tell you that her kid watches a show and imitates it” From the book “Educating Children with Autism” by the National Academies Press:

Studies over longer periods of time have documented that joint attention, early language skills, and imitation are core deficits that are the hallmarks of the disorder.

Another quote from the Cookie Magazine story:

McCarthy’s widely publicized journey began in 2004, when her son had a seven-hour seizure and went into cardiac arrest. When he got home from the hospital, Evan was put on a heavy dose of antiseizure medication, which kept him awake for four days and induced hallucinations that made him not recognize his mom and bang his head against the wall until he bled. “I ran out of my house and into my driveway and screamed at the top of my lungs to God to just take him away, because I loved him so much and he was in so much pain,” McCarthy says of the period she describes as her “second rock-bottom” (the first being the moment Evan’s heart stopped momentarily).

A couple of observations.

First, I wish Cookie Magazine had clarified the point as to how long after his vaccination the seizure came. His MMR was at 14 months, his first seizure was after he was 2.

Now for the second. Did Jenny McCarthy really write that she had wished her child would be taken by god?

I didn’t want to blog this story. Why give Jenny McCarthy more publicity? Well, here’s the paragraph that made me want to blog:

McCarthy is leading a more normal life now, too, after having felt very alone in her first marriage, to Evan’s dad, and suffering what she calls a “breakdown” two years after Evan went into cardiac arrest and suffered those terrifying seizures. “When your kid is psychotic or crazy, you go into this place of shock so you can remain calm,” she says. “A problem a lot of moms [of autistic children] have is that they need to get out all [their emotions] later. I kept mine bottled up for two years, and then I finally released all this pent up fear, sadness, and anger. I just cried and cried and cried and cried and cried.”

“When your kid is psychotic or crazy, you go into this place of shock so you can remain calm”

I just don’t know what to say. Autism is not “crazy” or “psychotic”. Why is this woman chosen by the press to represent autism?

Maybe next year Cookie Magazine could interview a mother who is autistic or, at least, has an autistic child.

Asperger Syndrome is not a disability, just ask Lenny Schafer

6 Aug

Lenny Schafer wrote one of the most insulting comments I have seen on the Age of Autism blog in a long time. This is actually old news–the comment was made on Luly 13th. I missed the comment, but how did I miss that it was, no kidding, picked as an award winning “comment of the week” by the “editors” of the Age of Autism blog.

If you didn’t see it, here is Mr. Shafers, award winning comment from the Age of Autism blog:

“Disability” is not a literary term open to subjective interpretation. It is a forensic, legal term defined in documents like the DSM-IV for the parsing of government entitlements and insurance compensations. Asperger Syndrome is not defined as a disability. Those with Aspergers do not get Social Security Disability benefits. They are not entitled to most state entitlement disability programs and are not qualified to park in disabled parking zones. Those with Aspergers ARE disadvantaged and deserve support and our advocacy for them, but not at the same levels for the disabled. Let us stop interchanging the term “disability” with “disadvantage”.

Also, the term “high functioning autism” is a street jargon misnomer and has no clinical definition, despite it widening use. It is a term that also trivializes autism. It is oxymoronic. Autism is defined by disability, lack of function. Is there such a thing as high-sighted blindness? Or high-hearing deafness? Perhaps “HighER Function Autism” might make more sense because it is not self-contradictory. (We then wouldn’t need the redundant “Low Functioning Autism” label either.)

The whole autism spectrum labeling is a mistake, in any event, for a number of reasons I won’t go into here. However, we are stuck with it. Let’s get clear on related word meanings. Lack of good communication skills is a definite disadvantage, but not necessarily a disability.

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

There is so much that can be said, point by point, in response to Mr. Schafer’s comment. But my guess is that most readers of this blog need no commentary to realize what a grossly insulting statement Mr. Schafer made.

What boggles the mind even further is that this was a comment to Mr. Jake Crosby’s piece, “Autism, Asperger’s: Who is Truly Disabled?“, a piece all about how Asperger syndrome truly is a disability. Mr. Crosby’s concluding statement in that piece was:

Unfortunately, that is what’s happening, but as a person with Asperger’s I can tell you that I am truly disabled, albeit much more mildly than others with autism.

While we have disagreed on some points, Mr. Crosby and I have been having a good discussion in the comments of this blog. I believe we both agree that Asperger Syndrome is a genuine disability. I couldn’t see him agreeing with Mr. Shafer’s comments, so I went digging to see what comments Mr. Crosby made.

Here are two comments by Mr. Crosby in response as posted to AoA:

I’m a contributing editor to this site, but played no role in Lenny Schafer winning the “comment of the week.” His comment isn’t just grossly offensive to parents of those on the higher end of the spectrum, but also to those of us ON the higher end of the spectrum.

and

Schafer’s post is wrong on so many levels. It is the comment of the week alright, the worst comment of the week.

I almost didn’t post Mr. Crosby’s comments. I didn’t want to go for the easy, “look there’s dissension in the ranks at AoA” message. As I said above, Mr. Crosby and I don’t see eye-to-eye on all subjects. But I can still recognize and respect the courage it took to speak out like that. Mostly, it is worth noting that Mr. Crosby doesn’t share Mr. Shafer’s opinion.

The Age of Autism has officially closed comments to Mr. Crosby’s piece and to the “commenter of the week” post.

I’d love to see the comments they deleted.

← Older Entries
Newer Entries →