Susan Senator

Hi Susan, I’m not a parent but an educational therapist (well, in training) who has worked with children who have an autism diagnosis. I’m game to give some of your questions a go.

What do you think of the concept of the Autism Spectrum? Do you find the wide spectrum a helpful, applicable and relevant concept for your child and for your family’s needs?

My thoughts, developed more fully below:

Autism is a spectrum disorder. Different people with autism have differing [symptoms] [attributes] [features*].

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* I don’t mean “facial features”. I mean features in the sense of, “that’s not a bug, it’s a feature!”
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Here I struggle between the research/accuracy dimension and the real-world services and supports available.

I suspect it would be helpful to have a much more subtle and refined typology of autism, describing dimensions in (for example) receptive language ability, expressive language ability, effects on gross and fine motor abilities, and so on.

But the reality for parents of children with autism is that there’s a big box that says “autism” and from that label flows services. My concern is that a finer, subtler typology would have the effect of cutting children off from services.

Do you think that diagnoses are most of the time accurate when kids first get them? (I mean the first formal diagnosis of ASD) Did your child’s diagnosis change in one way or another since then? To what do you attribute that? (faulty diagnosis? something you did that helped? something else?)

I don’t know. I’m not privy enough to the nuts-and-bolts of diagnosis right here where I live to opine with any degree of accuracy. However, I do know that a child with a ASD diagnosis has better access to early intervention and services than a child with perhaps almost the same symptoms/behaviors etc. who does not have an ASD diagnosis.

I am also reflecting on my own child’s first diagnosis of Specific Learning Disability–Reading, at age 18, and her later diagnosis Specific Learning Disability–Not Otherwise Specified. Did the reading element “go away”? No. She had sufficient remediation and later practice that she didn’t fit the “reading” criteria. However, she still needed the accommodations and supports that a “label” gave her to level the playing field in school.

I wonder how often a similar scenario plays out with the subjective, hard-to-quantify diagnoses like ASD and ADHD.

Aside from finding a cure, if that is what you wish for, what else do you wish researchers would work on, or what is most needed to make your life easier (education approaches; bona fide mainstream medical establishment research into the alternative biomed strategies like GF-CF, omega 3, and chelation; funding for family support; generous insurance; you tell me …?)

I mentioned typology, above — teasing out some clusters or sub-syndromes.

I’d like some good solid research relative to the actual social cognition deficits across the autism spectrum disorder, to define and quantify. Then I’d like more good solid research into particular curricula and approaches.

These two studies point out the problem:

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Behav Modif. 2007 Sep;31(5):682-707.
Social-skills treatments for children with autism spectrum disorders: an overview.
Matson JL, Matson ML, Rivet TT.

Louisiana State University, LA, USA.

Marked advances in the treatment of children with autism spectrum disorders (ASDs) has occurred in the past few decades, primarily using applied behavior analysis. However, reviews of trends in social skills treatment for children with ASDs have been scant, despite a robust and growing empirical literature on the topic.

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J Autism Dev Disord. 2007 Nov;37(10):1858-68. Epub 2006 Dec 29.Click here to read Links
Social skills development in children with autism spectrum disorders: a review of the intervention research.
Williams White S, Keonig K, Scahill L.

School of Medicine, Virginia Treatment Center for Children, Virginia Commonwealth University, 515 North 10th Street, Richmond, VA 23298, USA. swilliams25@vcu.edu

Social reciprocity deficits are a core feature of the autism spectrum disorders (ASD). This review summarizes the state of research in group-based social skills training programs for school-age children and adolescents with ASD. All published studies of group social skills interventions between 1985 and 2006 were reviewed, as well as dissertations examining group-based social skills intervention programs. To assess the state of the science, a template developed by an NIMH work group was applied to 14 identified studies. Based on this review, the empirical support for this approach is incomplete, but promising intervention strategies were identified. Recommendations for the design of future treatment trials to guide clinical practice are offered.
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As to various alternative treatments:

Chelation. I’m with Steve Novella. Enrolling children (autistic or not) in a trial of chelation is unethical. Like Prometheus, I think that additional trials of secretin are unwarranted.

As Kristina Chew and others reported, there is a GFCG double blind clinical trial underway. Again, it may help a subset of children with autism. I have fewer (or no) ethical objections to a dietary treatment of this kind.

Omega-3: one small promising study.

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Biol Psychiatry. 2007 Feb 15;61(4):551-3. Epub 2006 Aug 22.

Omega-3 fatty acids supplementation in children with autism: a double-blind randomized, placebo-controlled pilot study.
Amminger GP, Berger GE, Schäfer MR, Klier C, Friedrich MH, Feucht M.

Department of Child and Adolescent Neuropsychiatry, Medical University of Vienna, Vienna, Austria. paul.amminger@meduniwien.ac.at

BACKGROUND: There is increasing evidence that fatty acid deficiencies or imbalances may contribute to childhood neurodevelopmental disorders. METHODS: We conducted a randomized, double-blind, placebo-controlled 6-week pilot trial investigating the effects of 1.5 g/d of omega-3 fatty acids (.84 g/d eicosapentaenoic acid, .7 g/d docosahexaenoic acid) supplementation in 13 children (aged 5 to 17 years) with autistic disorders accompanied by severe tantrums, aggression, or self-injurious behavior. The outcome measure was the Aberrant Behavior Checklist (ABC) at 6 weeks. RESULTS: We observed an advantage of omega-3 fatty acids compared with placebo for hyperactivity and stereotypy, each with a large effect size. Repeated-measures ANOVA indicated a trend toward superiority of omega-3 fatty acids over placebo for hyperactivity. No clinically relevant adverse effects were elicited in either group. CONCLUSIONS: The results of this study provide preliminary evidence that omega-3 fatty acids may be an effective treatment for children with autism.

PMID: 16920077

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A larger, carefully designed study seems to be warranted.

In general, greater societal support for families with autistic members seems also necessary, including better insurance coverage.

I am currently writing a book for student teachers; a large section of this book will be dedicated to teaching children with special needs. I am looking for parents to write short testimonials that can be featured within the text. If you are interested in writing something..even a few sentences..please contact me at k2broome@wmich.edu

Please help me to educate our future teachers!

Thank You!