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Optimal Outcomes for Autism

24 Jan

A recent study discussed people who were given autism diagnoses but later did not qualify for the diagnosis.  The study is Optimal outcome in individuals with a history of autism (full text online) and Emily Willingham has a discussion of it as Can People Really Grow Out of Autism? Since she’s discussed the study, I’ll focus on “optimal outcome”. At least my take on it.

The authors of the study refer to Optimal Outcome as

we require that the individual be without any significant autism symptoms and function within the normal intellectual range; however, other difficulties, such as weaknesses in executive functioning or vulnerability to anxiety and depression may still exist.

Other authors have considered individuals who “lose” autism diagnoses but remain intellectually disabled.

There is an additional group of children who lose the diagnosis, but still have significant intellectual or language disability (see for example Turner & Stone, 2007, and Sutera et al., 2007) and this is certainly another kind of good outcome for these children.

I have a different definition of “optimal outcome”. Happiness. Most parents want to see their kids happy. I don’t know why I should change my definition just because I have an autistic kid. And, yes, one can be autistic and happy. And, no, being non autistic is not the same thing as being happy.

It’s not a good definition for research. My guess is that there are reasonable “happiness” measures researchers can use, but it will likely be more difficult to reliably quantify than “not autistic”. But for this discussion I’m not a researcher.

I’ll take happy and autistic over non-autistic and unhappy as an optimal outcome for my kid any day.

Which is a good place to segue into the cure debate. I don’t spend a lot of time on the cure discussion. Partly this is because like optimal outcome, different people have different definitions of “cure”. Is a cessation of self injurious behaviors a cure of autism? Is the ability to mask one’s autism behaviors for long periods of time a “cure”? Is a complete change in the way in which one thinks a cure? The answer is yes–each of these is a definition some people chose. And there are more.

Where the cure discussion goes really wrong, in my opinion, is when people assert that “not autistic” is better than “autistic”. Often to the point of basically trashing autistics in the process by using terms like “train wrecks”, “tsunamis”, “burdens” or worse (yes, it gets worse). A lot of harmful language is used in promoting the idea of a cure.

When told that I am against an autism cure (strangely, I am rarely asked my opinion, I am told it) I sometimes respond, “which cure is that, exactly?” Makes people pause. If the conversation continues, I ask, “tell me the exact steps I need to take which you can guarantee will cure my child of autism”. The cure debate is a hypothetical topic. One which I wish more people would really engage in, but hypothetical. I wish people would engage in it to get to the point of at least accepting as valid the idea of “let’s make a world where if a person is offered a cure, she will be equally accepted either way, and will be offered the support she needs either way.” I guess that’s my idea for an “optimal outcome” for society.


By Matt Carey

Minamata Convention Agreed by Nations: thimerosal containing vaccines exempt from mercury ban

23 Jan

Shot of Prevention are reporting Decision Made: No Global Ban on Thimerosal. A worldwide treaty has been finalized involving reducing mercury in the environment. Much discussion of late focused on whether thimerosal containing vaccines (thimerosal being a mercury compound) would be included in the mercury ban.

According to the United Nations Enviromntal Programme (UNEP) press release on the Minamata Convention:

Governments approved exceptions for some large measuring devices where currently there are no mercury-free alternatives.

–Vaccines where mercury is used as a preservative have been excluded from the treaty as have products used in religious or traditional activities

–Delegates agreed to a phase-down of the use of dental fillings using mercury amalgam.

From my perspective I would be happy to see thimerosal replaced with another safe preservative. There is no tested alternative method–either through preservatives or improved cold-chain control of vaccine distribution. And this U.N. body, people highly focused on the need to reduce the worldwide emissions of mercury, has determined that the use of mercury containing vaccines can continue. In other words–the arguments made that thimerosal containing vaccines were potentially unsafe were not convincing to a body whose sole purpose is limiting exposure to mercury. This includes the argument that thimerosal containing vaccines increase the risk of autism. And for this site, that is the important take-away: the notion of a mercury induced autism epidemic really isn’t well supported. Yet another example of how unconvincing the argument is.


By Matt Carey

Is Slate misrepresenting the Neurodiversity movement?

22 Jan

In a word, yes. In, Is the Neurodiversity Movement Misrepresenting Autism?, Slate.com author and autism parent Amy Lutz argues that the neurodiversity movement is essentially dividing the autism community between “high-functioning” adults and parents of “low-functioning” children. Shannon Rosa clarifies this point for Ms. Lutz in Why Did Amy S.F. Lutz Attack the Neurodiversity Movement? That is a more full discussion of the article than here, and I encourage readers to read Ms. Rosa’s account.

I’ll consider two segments of Ms. Lutz’ article. First, what is essentially her conclusion:

What I am saying is that a real autism rights movement would recognize that people are truly neurodiverse, with brains of very different levels of functioning, instead of implying that we are all the same, with “intact minds” that just need to be accessed.

The author doesn’t see neurodiversity as a “real” rights movement because, in her view, neurodiversity implies that “we are all the same, with ‘intact minds’ that just need to be accessed.”

To anyone who has spent any time seriously considering the neurodiversity movement, the above statement is an obvious misconception. A straw-man argument, if you will. Just start with the name: neurodiversity. How one gets from a diversity movement to “we are all the same” is beyond me. Even after reading the article. Yes, I see the argument the author tried to make. I also know that her argument is full of misconceptions and, frankly, attacks.

I am more moved by ideas than movements, so I don’t use the term neurodiversity much. However, I can put my view simply: you and I think differently, but we are equals. You can derive a lot from that, but it’s one way of seeing “neurodiversity”.

Despite this overwhelming evidence, the cases discussed above have had a huge impact on the autism community, which has increasingly been divided between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world.

Let’s take this in two pieces. First, her “overwhelming” evidence is basically arguments that some of the more known names of significantly challenged adult autistics are not what they present themselves to be. An easy argument to make if you misrepresent how these adults have represented themselves. Claiming that Amanda Baggs presents herself as typical of autistic development, for example, is plainly false. It is a rehash of old, tired attacks.

Now to the more important part the supposed division “between those who consider autism a disability and those who believe it is merely a different, not worse, way of thinking and interacting with the world”.

First off, didn’t she say in the quote above that Neurodiversity proponents see people as being “all the same” and that if they were a “real” diversity movement, they would acknowledge that there are differences? But in this quote neurodiversity proponents believe autism is a “different” way of thinking.

Leaving aside the logical inconsistencies of the article, this line is an old false-dichotomy argument. Who says there is a division between disability and difference? A disability is a difference. Another way to say it is that autism is a disability and a difference. It’s redundant in my opinion, but sometimes redundancy is needed. Would I say “not worse”? Yes. Does that mean I deny the disability? That I don’t acknowledge the challenges posed by autism? That I don’t believe life is more difficult for autistics than non-autistics? No, no and no.

As I read it, Ms. Lutz’ comment implicitly states that disability is worse than not being disabled. From one online dictionary, I get this as the number one definition for “worse”: of more inferior quality, value, or condition. I have no reservations saying that my child has huge challenges, many of which will not be overcome even with great effort. Is any part of my child of “inferior quality, value, or condition”? No. I see different, not less. Not inferior. In need of great support, yes. But as an equal, not out of pity and without taking away rights and dignity.

Ms. Lutz finishes her article by positing that neurodiversity propenents act out of some level of ignorance, fed by what she asserts is misinformation about what autism really is. I believe Ms. Lutz has some ignorance to overcome on her own. She closes with a statement about “kids with the unfortunate trifecta of autism, intellectual disability, and dangerous behaviors” and how “any portrayal of autism that glosses over their profound disability closes the door on them all over again.” I would say that first we need to acknowledge that (a) this is not confined to children and (b) autism and dangerous behaviors can come without intellectual disability, and that segment of the population should not be glossed over either. But that aside, consider the basic question of how do we move forward with a very diverse population and see that all are served appropriately? The fact of the matter is that intellectual disability, especially those unable to read, write and/or speak, is a small segment of the autistic population. And as we learn more about autism, this fraction is an ever shrinking percentage of the identified autism population. But the way forward is not to claim some schism between “high-functioning” autistics and parents of those with different challenges. My experience is that once a person sees a strong civil rights aspect to autism–and disability in general–one sees the need to work for all in the population.


By Matt Carey

MMS, yeah, it’s bleach

11 Jan

Last year the AutismOne parent convention hosted a talk by someone promoting MMS as a treatment for autism. MMS is a bleach. But MMS supporters and defenders rush to discussions of MMS with claims that it is not a bleach and calling it a bleach is fear mongering.

Only, it is a bleach. As in, apply it to cloth and the color goes away. Don’t believe me? Check out MMS: Yes, It Is Bleach, an article by Emily Willingham at The Thinking Person’s Guide to Autism.

Comment on National prevalence rates of bully victimization among students with disabilities in the United States

10 Jan

Bullying is a major issue. This is especially true among the disabled. A recent study focused on bullying within the school aged autistic population, and I discussed that at the Autism Science Foundation blog. Another study has just come out recently in School Psychology Quarterly, National prevalence rates of bully victimization among students with disabilities in the United States. I hope to obtain the full paper and review the methods, but for now here is the abstract:

This study examined the prevalence rates of bully victimization and risk for repeated victimization among students with disabilities using the Special Education Elementary Longitudinal Study and the National Longitudinal Transition Study-2 longitudinal datasets. Results revealed that a prevalence rate ranging from 24.5% in elementary school to 34.1% in middle school. This is one to one and a half times the national average for students without disabilities. The rate of bully victimization was highest for students with emotional disturbance across school levels. Findings from this study also indicated that students with disabilities who were bullied once were at high risk of being bullied repeatedly. Elementary and middle school students with autism and high school students with orthopedic impairments were at the greatest risk of experiencing repeated victimization. Implications of the findings are discussed. (PsycINFO Database Record (c) 2013 APA, all rights reserved)

Students with disabilities are victims of bullying as much as 1.5 times more often than their non-disabled peers. The authors also found Elementary and middle school students with autism and high school students with orthopedic impairments were at the greatest risk of experiencing repeated victimization.

The fact that the disabled are victims of bullying at a high rate is not surprising. The fact that this includes autistics is not surprising. It is valuable, though, to get this documented. It does beg the question of what will happen to change this?


By Matt Carey

Comment on: The association between bullying and the psychological functioning of children with autism spectrum disorders

10 Jan

A study published recently addressed the issues of bullying among school age autistics: The association between bullying and the psychological functioning of children with autism spectrum disorders. The abstract is below. I wrote a discussion of this for the Autism Science Foundation’s blog:

Comment on The association between bullying and the psychological functioning of children with autism spectrum disorders.

OBJECTIVE: : Bullying has become a major national concern, particularly as it affects children with disabilities. The current study aimed to determine the association between psychiatric comorbid conditions, involvement in bullying (victim, bully, or bully-victim), and the immediate psychological correlates of bullying among children with autism spectrum disorders (ASDs).

METHODS: : A national sample of 1221 parents completed a survey dedicated to the bullying and school experiences of their child with ASD, reporting on the immediate consequences of bullying involvement, including their child’s psychological well-being and any psychiatric comorbidity. Multivariate logistic regressions were performed to determine whether specific psychiatric comorbidities were associated with an increased risk of involvement as victim, bully, or bully-victim. Analyses of variance determined the relationship between bullying frequency and psychological functioning. All models adjusted for child and school covariates.

RESULTS: : Children who were frequently victimized were more likely to present with internalizing symptoms, whereas children who frequently bullied others were more likely to exhibit emotion regulation problems. Children who were identified as frequent bully-victims presented with both internalizing symptoms and emotion regulation problems. Children with attention-deficit hyperactivity disorder (ADHD) and depression were more likely to have been victimized, whereas children with conduct disorder (CD) or oppositional defiant disorder (ODD) were more likely to have bullied other children. Children identified as bully-victims were more likely to have ADHD, CD, or ODD.

CONCLUSIONS: : Children with ASDs who had displayed bullying behaviors in the past month exhibited psychological impairments, including psychiatric comorbidity. The frequency of bullying behaviors was significantly associated with the level of impairment.

A Decade of Left Brain/Right Brain

1 Jan

2013 marks the 10 year mark for Left Brain/Right Brain. The blog actually started in June, as I recall, but June of 2003. The blog started out as a place for Kev Leitch to write about his life and his work. Most of his writing about his life was about events pertaining to his autistic child. I found the blog a few years later and it had already evolved significantly from its early days. It has evolved since then as well.

In a time when the online and public discussion was dominated by groups of parents willing to characterize autistics as “train wrecks” and “empty shells” who had “descended into the hell of autism”, Kev stood up to counter the message. Kev put together the autism hub to band together autistics and allies who were writing from a perspective of respect. Kev hosted an online forum and at one point this blog was home to about 10 writers, autistic and allies.

Kev has moved on to other ventures. I wish him well. He did a lot of good here.


By Matt Carey

SFARI looks back at 2012 autism research

29 Dec

SFARI, the Simons Foundation Autism Research Initiative, hosts one of the best autism research focused blogs there is. The Simons Foundation is the largest private funder of autism research.

SFARI has a list of 10 notable papers:
Notable papers of 2012

The list includes genetic, brain structure and treatment studies.

And a discussion of research events from 2012 I. Their director’s column:

Director’s column: 2012 in review

Which is a good discussion of highlighted results.


By Matt Carey

San Diego Family accuses caregivers of abuse

28 Dec

A family of an autistic young adult have accused caregivers of abuse after secretly recording video. In apparently pretrial hearings, the mother explains what she saw. The defense causes her of withholding information.

Preliminary hearing Thursday for 2 men accused of abusing autistic man

The video is, as you might imagine, painful to watch. So far the embed code doesn’t work, which might be for the best.

San Diego, California News Station – KFMB Channel 8 – cbs8.com


By Matt Carey

What has become of Autism Science Digest?

26 Dec

Autism Science Digest was an effort by AutismOne to publish their take on autism science in a magazine format for a general audience. AutismOne is best known for their annual parent convention which focused largely on alternative medicine and vaccine causation.

It is about the time that AutismOne should be publishing their speaker list for next year’s conference so I checked their website. For those interested, the speaker list reads like most past lists.  Andrew Wakefield, the former researcher who promoted the idea that the MMR vaccine causes autism, will speak. So will Keri Rivera, who last year gathered much criticism for promoting forcing disabled children to ingest bleach or undergo bleach laced enemas. Interestingly, neither Mark nor David Geier are on the list. The Geiers have been frequent speakers at AutismOne and other venues favorable to their failed ideas about mercury in vaccines causing autism, as well as bizarre proposals that using drugs to shut down sex hormone production can be used to treat autism.  While not a regular at AutismOne, Luc Montagnier will not make a return visit.  Last year Dr. Montagnier brought the prestige of a Nobel Laureate to the convention. While his presence was touted strongly by supporters of AutismOne, Dr. Montagnier’s ideas were lacking the scientific rigor one might expect from a Nobel laureate (to put it mildly). Of course Jenny McCarthy returns, perhaps to tell us all once again that those who don’t follow her ideas wish for our children to remain disabled so we can bask in the sympathy of our acquaintances.

That all said, while perusing the AutismOne website I noted that the cover for their “Autism Science Digest” hadn’t changed since my last visit.  That was some time ago. The cover informs readers about the then upcoming 2012 AutismOne convention (last April), so my interest was piqued and I checked the page for the “Digest” and found this announcement: Autism Science Digest is temporarily unavailable.

One is left wondering how “temporary” temporary is in this case. Autism Science Digest was launched in August 2011 so the lifespan (should temporary=permanent) seems a bit short.


By Matt Carey