A safe place to come for advice, support and inspiration.

by Seana Smith on Tuesday, February 23rd, 2010

What a lovely phrase that is. It’s just what we wanted the Australian Autism Handbook to be, but didn’t ever express it quite so well.

“A safe place to come for advice, support and inspiration.”

Have you heard of Autism United? Autism United is a new network for parents, professionals and people with an autism spectrum disorder. It has been created by a mum called Nicole and uses the Ning platform.

Ning is a simple to use online social networking site builder. You can join and then post photos, videos, add your comments to the blog, ask questions in the forums… lots of ways to communicate with others.

In the past I’ve been a very active member of some Yahoo groups, and am also a fan of some good autism-related Facebook pages. But I think the Ning framework is the best I’ve seen yet – for me it is lovely to see photos of members. For we visual people it really helps to build the community.

You can find out more about Autism United at the website:

www.autismunited.ning.com

I emailed Nicole to ask why she had started Autism United and she replied:

“The main reason that I wanted to start this network was because although these days you are hard pressed to find anyone who is not affected by autism, most of us are still dealing with it on our own behind closed doors.  I figured that if I feel lonely, isolated and often at a loss then, many others must feel the same esp those who are just starting out.

I had been talking about doing something like this for some time as I felt there was a real need. All the challenges that we faced over Christmas gave me the push to get started.

To be honest I think over the past couple years I have been working through different stages of grief since Dillon’s dx but over recent times was determined to turn that into something more proactive.

My vision for this community is for it to be more than a forum, but a real community, be virtual or otherwise.  I am hoping that we can make a difference in each others lives and even go the extra mile to make changes.”

I also appreciate very much Nicole’s notes:

“Autism United Guidelines
All members of Autism United must do their best to keep this community drama free. There can be no name calling or personal attacks on anyone. Its important to be respectful even when we don’t agree with other member’s opinions.”

So true!  We all have enough drama in our lives without finding it online as well.

2 COMMENTS

1 in 110

by Benison O'Reilly on Tuesday, February 16th, 2010

At Christmas time I said I planned to write about the latest CDC (US Centers for Disease Control and Prevention) ASD prevalence data, released on December 18 last year. Finally I’ve got around to doing it.

There were some mutterings on the Internet that we would have confirmation of that 1 in 100 figure, which was reported in a couple of other studies last year, but the CDC prevalence—amongst 8-year olds in 2006—was subsequently revealed to be the slightly less newsworthy  1 in 110. Still, that’s a big increase from the previous survey conducted in 2002.

The full title of the study is: Prevalence of Autism Spectrum Disorders — Autism and Developmental Disabilities Monitoring Network, United States, 2006. MMWR 2009; 58(SS10):1-20

Prevalence was estimated through a retrospective review of records in eleven sites participating in the Autism and Developmental Disabilities Monitoring (ADDM) Network. To analyse changes in ASD prevalence, CDC compared the 2006 data with corresponding 2002 data, collected from 10 sites (all sites the same with the exception of Florida, which was not included in the 2002 survey). Children aged 8 years with a diagnosis of an ASD or descriptions consistent with an ASD were identified through screening and review of health and education records.

Overall 2,757 (0.9%) of 307,790 children aged 8 years were identified as having an ASD, indicating an overall average prevalence of 9.0 per 1,000 population. Thus in 2006, on average, approximately 1% or one child in every 110 was classified as having an ASD.

The average prevalence of ASDs among children aged 8 years increased 57% from 2002 to 2006.  The researchers believe that whilst some of the increases are due to better detection, a true increase in risk cannot be ruled out.

Delays in diagnosis persisted (average age at diagnosis was 54 months) but ASDs were diagnosed by professionals at earlier ages in 2006 than in 2002.  Forty-one percent of children with an ASD also had signs of intellectual disability, confirming what a lot of us already knew: the majority of people on the spectrum are not intellectually impaired, as originally believed.

If you’re interested, more information is available at:

www.cdc.gov/ncbddd/features/counting-autism.html

3 COMMENTS

A little light reading….

by Seana Smith on Wednesday, February 10th, 2010

Have you heard of the magazine “Autism Asperger’s Digest”?

This Texas-based bi-monthly is published by  Future Horizons, one of the largest publishers of autism books and materials in the world.    The magazine aims to provide “real life information for meeting the real life challenges of ASD” and it’s just reached its 10th birthday.

You can read more about the magazine here:

http://www.autismdigest.com/

And more about Future Horizons here:

http://www.fhautism.com/

I subscribed to the magazine last year after having read it sporadically in the past.  I do like it a lot, there’s a great deal of variety with lots of information plus plenty of thoughtful and well-written stories from parents.

Here are some of the articles from the current edition.

* Step by step teaching guideline for parents of significantly impaired children with ASD.

* Vision therapy: ideas for school and home.

* A Column from Ellen Notbohm

* Early Intervention … 10 years later!

* Temple Grandin’s column titled “Learning never stops.”

Some of the adverts made me feel a bit distressed eg one for hyperbaric chambers encouraging the reader thus:  ”Don’t put your miracle off any longer.  Give us a call today.”

Yuck!  That’s too exploitative for me… not that I have anything against hyperbaric chambers (I know there are the subject of much research just now) nor indeed miracles… but people who PROMISE miracles… harumph!

But I’m a believer in that old maxim:  ”Take what you like and leave the rest” and I do find a lot to like in this magazine.

2 COMMENTS

Gastrointestinal disorders and autism

by Benison O'Reilly on Wednesday, February 3rd, 2010

Parental anecdotes suggest that gastrointestinal disorders such as abdominal pain, constipation and chronic diarrhoea are more common amongst children with ASDs than in their typical peers. But are they really more common, or do parents of children with autism just look more strenuously for physical complaints that might explain their child’s odd and unsettling behaviours? Or maybe GI problems are more common in a subset of individuals with an ASD and the majority of kids on the spectrum remain unaffected?

The jury is still out. The reported prevalence of gastrointestinal symptoms in children with ASDs has ranged from 9% to 70% depending on the type of study used to assess this.(1) As it seems with most health issues associated with autism, the research surrounding this topic is patchy and often of fairly low quality, leaving lots of questions unanswered.

At last the mainstream medical community has tackled this evidence gap and produced a report with the ponderous title: Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals with ASDs: A Consensus Report. Consensus reports are just that: a group of experts get together and reach a consensus, based on their own clinical experience and the existing evidence. In this particular case the experts came from a wide variety of disciplines: child psychiatry, developmental paediatrics, epidemiology, medical genetics, immunology, nursing, paediatric allergy, paediatric gastroenterology, paediatric pain, paediatric neurology, paediatric nutrition, and psychology.

The report is not without controversy, as it questions some accepted beliefs, or rather beliefs accepted by many parents and ‘biomedical’ practitioners working outside the mainstream. For example

• The existence of a gastrointestinal disturbance specific to persons with ASDs (eg, “autistic enterocolitis”) has not been established.

• The evidence for abnormal gastrointestinal permeability [in other words ‘leaky gut’] in individuals with ASDs is limited. Prospective studies should be performed to determine the role of abnormal permeability in neuropsychiatric manifestations of ASD

• Available research data do not support the use of a casein-free diet, a gluten-free diet, or combined gluten-free, casein-free (GFCF) diet as a primary treatment for individuals with ASDs.(1 )

Science-speak, sorry. Scientific writing is almost always like that; everything is qualified. It’s the nature of science—nothing is considered ‘proven’ until there is an overwhelming body of good quality evidence to support it—but unfortunately this sort of language sounds wishy-washy to parents desperately seeking answers.

Anyway, there are some significant breakthroughs contained in this report; in particular  it recognises that in individuals with an ASD and limited communication skills, gastrointestinal complaints (e.g. abdominal pain) may manifest themselves as problem behaviours like sleep disturbance, aggression and self-injury, and that physical causes for problem behaviours should be considered if a child with autism starts to act up unexpectedly. When it comes to investigating GI complaints we need to be particular vigilant with individuals who lack the ability to communicate their distress.

The report also calls for lots more research and recommends that all clinical studies include a genetic testing component, in the hope of identifying particular genotypes of children with ASD who are more prone to GI complaints.

For those who are interested, the report was published in the January issue of the medical journal Pediatrics and is free to download at: http://pediatrics.aappublications.org/cgi/content/full/125/Supplement_1/S1

1. Buie T, Campbell DB, Fuchs GJ, et al. Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals with ASDs: A Consensus Report. Pediatrics 2010;125:S1–S18

17 COMMENTS