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

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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.

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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

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High School – the first three days

by Seana Smith on Friday, January 29th, 2010

Well, we made it, and yes, I did cry.   Tears trickled as I dropped my son Tom off  and when we new parents listened to the teachers talking at our first general parents’ meeting.

It all really took me back to Tom’s very first day at school seven years ago, but my emotions were totally different.  Then it was anxiety and hope and concern and relief all in a big teary mess.   This time was pride and gratitude most of all.  I’m so proud of my son, and so grateful to his teachers for sharing the pleasures and pains of his care as he grows up to be a man.

And when I say that WE made it… well, it was a joint effort… and we parents did talk about how we felt like new boys and girls too.    A big job for me is to make friends with other parents, to be aware of who is who and to be able to support Tom very much as he begins to make friends with other boys.  This will be much trickier than at primary school, but I know that I can help him a lot, explain his oddities to both parents and children.

I must also help my son to get the right bags, books and clothes to the right place at the right time… it’s no little matter when geting all four children ready for school and preschool in the morning!   Tom will be terribly anxious if he misses anything so I need to keep my wits about me as we do this.. and I don’t find the whole thing easy at all.

Tom’s a very social boy, and indeed rather over-social sometimes.  The social aspect of school isn’t going to be the biggest issue though, it’s the academics.  Tom has serious learning difficulties and a language disorder.  His teachers should be well briefed that Tom needs to have a modified curriculum, which I imagine is quite a burden for them.   Tom (and I!) are quite blithe about his learning issues, but I do fear that one day he may be more aware of his differences and then will need lots of support.

Anyway, this is the start… I am so glad to have found a school which is very welcoming to our family and where the lines of communication seem to be strong.  In fact I am just off to a meeting with his teachers now.   Must dash, but one final thought….

Tom’s first day at high school reminded me also of my first day at high school way back last century… especially in the immediate crush on the head boy… haven’t I matured at all in the last 29 years??!!

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Ten Things Every Child with Autism Wishes You Knew (or occasionally need to be reminded about)

by Benison O'Reilly on Sunday, January 10th, 2010

I have mentioned before that I go through stages when I steer clear of books about autism. Sometimes it’s because of work commitments (I have two other writing projects at present) and sometimes it’s just because I want to read for pleasure.

Anyway I’m on holidays right now and decided, as penance for all my partying and overindulgence in December, to forgo the trashy novel and tackle an autism book that has been sitting on my bedside table for months, staring at me in an accusatory fashion, as if saying, ‘You bought me. Why don’t you read me?’

I don’t know why I kept avoiding it — it’s such a slim volume, a ‘knock it over in a couple of hours’ book.  It is, as you may well have guessed, Ten Things Every Child with Autism Wishes You Knew (Future Horizons, 2005), by American author and ASD mum Ellen Notbohm.

Well, I’ve read it now and can give it the big thumbs up.

My only qualification is this:  it’s liberally sprinkled with anecdotes of success relating to Ms Notbohm’s own son, who I have to say comes across at very high functioning, and I imagine this might grate for some parents of children with more profound disabilities. (It even grated a bit with me – it’s impossible not to compare). I’m sure many of her son’s achievements came about as a consequence of Ms Notbohm’s wonderful committed parenting, but I’ve known equally committed parents who have not been fortunate enough to witness these outcomes.  I think the book would be stronger if she used anecdotes showcasing a greater range of children to illustrate her points.

However, it’s a minor quibble.  It’s a warm hearted book from a warm hearted ASD mum, who preaches acceptance and understanding. In my opinion the most important of her ten ‘things’ are these:

• *I am first and foremost a child. I have autism. I am not primarily ‘autistic’.
• *Please remember to distinguish between won’t ( I choose not to) and can’t ( I am not able to).
• *Please focus and build on what I can do rather than what I can’t do.
• *If you are a family member please love me unconditionally.

I wish more parents and educators would embrace Ellen Notbohm’s philosophies, focusing more on what children with ASD ‘can-do’ instead of ‘can’t-do’.  The latter approach is probably setting many young people up for self-esteem problems.

Not that I’m claiming perfection on this point; on the contrary the book was a timely wake-up call for me after I lost my cool with Joe for being too scared to go on most of the rides at the (very expensive) fun park we attended the other day. When he insisted on playing 18 holes of minigolf in the baking sun before we left I should have celebrated his interest in and perseverance at the game, rather than grumble on about being hot and tired.

So, if like me you’re bit of a jaded ASD parent, I’d recommend you get hold of a copy of Ten Things Every Child with Autism Wishes You Knew to remind yourself what it’s all about. I’m planning to stick a couple of inspirational quotes on my fridge when I get home.

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Merry Christmas from the authors of ‘The Australian Autism Handbook’

by Benison O'Reilly on Thursday, December 24th, 2009

Seana is down the coast with her family and hopefully nowhere near a computer screen, so I will pass on Christmas greetings to our readers on her behalf.

I was planning a weightier contribution today, on the latest CDC prevalence data from the US, but I’ve decided that can wait until next week.

One of the many pleasures I’ve had this Christmas is the sight of the attractively decorated Christmas tree in my living room, surrounded by brightly wrapped presents.  When Joe was younger he would constantly remove decorations from the tree, attracted by their colour and shine. He’s always had a few visual stims. As a consequence our tree always looked like it had been decorated by someone who had consumed too much of the Christmas punch!  We also couldn’t put wrapped Christmas presents under the tree, because young Joe assumed all gifts were for him and would rip the paper off them just as quickly as I could wrap them.

Now the attraction of Christmas decorations has passed (although not completely the visual stims) and he can read the cards on the presents and know they are not for him.  However, I got him to help to wrap the presents for his younger cousins, so that he would know they weren’t toys that would interest him, just in case!

Progress with a child on the autism spectrum can be measured in many ways.

Anyway, we hope that you have a wonderful Christmas with your relative with an ASD and that 2010 is a good year for you all.

Best wishes,

Benison and Seana

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Rolling Out the Autism Specific Early Learning and Care Centres

by Seana Smith on Friday, December 18th, 2009

2010 will see the start of something new for Australia, government-funded full-time child care centres for children with autism spectrum disorders.  These will be a real boon for working parents and for families with lots of children especially.

There are six centres opening next year which will provide places for 120 children.  So this is, like the Helping Children with Autism package, a good start… but just a start in the campaign to provide expert, intensive and proven early intervention programs for every single Australian child with an ASD.

To read all about the centres and find out where they all are, click below:

http://www.fahcsia.gov.au/sa/disability/progserv/people/HelpingChildrenWithAutism/Pages/autism_specific_qanda.aspx#3

As ever, it’s a great idea to get your name on a waiting list early, here’s a link to a pdf with info on how to get on the waiting list for the SW Sydney Centre:

http://www.ku.com.au/resources/other/Marcia%20Burgess%20ASELCC%20Centre%20Brochure.pdf

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On GPs and autism

by Benison O'Reilly on Thursday, December 10th, 2009

This quote early in the Australian Autism Handbook reflects an all too common experience:

I regret wasting a year listening to doctors who kept telling me that my son was “delayed” but would “catch up”. I should have arranged a full assessment as soon as I realised something was wrong.

We all know that kids with ASD are not going to ‘catch up’, at least not without a lot of intervention. Parents have the right to feel aggrieved when important months are lost as a consequence of false reassurance, but unfortunately an experience like this can go on to colour (and not in a good way) the ongoing relationship between an ASD family and the mainstream medical world.

Usually the main culprit identified in these stories is the family general practitioner. I happen to know a fair bit about GPs, as I’m married to one. I also happen to know that GPs receive virtually no education in ASDs.  It’s thus unsurprising that many of them get it wrong, especially when presented with a child displaying the sometimes subtle symptoms of PPD-NOS or Asperger’s.

Still, something needs to change, and the medical community is aware of it. A 2008 survey in the UK found that 80% of GPs believed they needed additional guidance and training to help them identify and manage ASDs better, and it’s likely an Australian survey would produce similar results.

Keen to bridge the gap between parents and his medical colleagues, my husband recently developed a series of learning objectives on ASDs for GPs. He presented his ideas in a paper at the Asia Pacific Autism Conference in August, provoking some interest from the specialist medical media.   As a consequence, a feature article appeared in the November 11 issue of Australian Doctor, the writer, Jane McCredie, doing an exemplary job of summing up the issues surrounding the GP and parent divide.  Unfortunately the article is not accessible to the general public but I have been give permission to quote from it.

Associate Professor Cheryl Dissanayake, Director of La Trobe University’s Olga Tennison Autism Research Centre, was interviewed for the piece.  She agrees that doctors need to act sooner:

“Six months is a long time in the life of a developing baby…That’s where we have to empower both parents and primary care professionals, if they have concerns, to act on them.”
“It shouldn’t matter if it’s autism or not autism. If the child’s not developing typically we need to know about that, act and get that child into service.”

As the article makes clear, no one is expecting GPs to become experts in ASDs. That’s not feasible, nor even desirable.

But it is reasonable to expect that GPs be aware that any child presenting with any of the red flags:

*lack of babbling  or pointing  by 12 months;

• *no sharing of interest in objects or activities with another person;
•  
• *no single words by 16 months, or no two-word (non-echoed) phrases by 24 months; or
•  
• *any loss of language or social skills at any age;
• should be referred  immediately for specialist assessment.

In the ideal world of the future GPs could also learn to actively screen toddler for ASD symptoms, and become genuine advocates for families affected by ASD: helping them to access the full range of services available under Medicare; directing them to reliable information sources, and providing emotional and practical support to struggling parents and siblings.

I hope lots of medicos read their Australian Doctor  on November 11.

Under the auspices of the training organisation, GP Synergy, my husband recently ran two small ASD training seminars for GPs: one in Sydney and one in regional NSW, which were enthusiastically received by all participants. It’s a drop in the ocean but there is no reason why other general practice training organisations can’t follow suit.

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More YouTube – Video Modeling

by Seana Smith on Thursday, November 26th, 2009

Here’s another great use for YouTube, using clips as video models.   The link below is to a video of a boy getting a haircut, and could be used by all sorts of kids to give them a preview of what might happen.

Parents can also look at this and see the sorts of thing they could film themselves to show their own child.

On the subject of video modelling, a group in the US is getting together to look at promoting its use to schools and families.  If you have an interest in video modelling, you might like to join.

Technology Integration in Special Education

http://tech-in-sped.ning.com/

And if you are asking:

What is video modelling???

Here is a bit of information I have written about it:

What is video modeling?

Video modeling (VM) is, simply, the use of video to teach something new to a child.  The aim is to have the child imitate the “model” shown.

What can be taught?

Studies have shown that VM can be effective at teaching:   conversation skills, self-help skills, requesting, perception and expression of emotion, toy play and many other play skills.   A short selection of academic articles is given below.

University studies are all very well, but can VM help my child?

Excellent question!   If your child loves to watch television, that is a great start.   If they already copy things they have seen on television then all the better.   The only way to really find out is to try.

How do we get started?

There are two approaches; either make your own videos, or buy some commercial videos.   Several types are available, some of which have been made specifically for children with an ASD (Watch Me Learn and Fitting In and Having Fun.)

Making your own.

First decide exactly what it is you are aiming to teach your child.   As an example, if you wish to teach toy play with model cars, then find a person whom the child finds highly reinforcing (it could be mum, dad, granny or a sibling).   Video the model doing some simple car play, using simple language of the type the child uses, or just making car noises.

Make a 2-3 minute video.  Show this to the child 2-3 times and then show the same toys to the child  and encourage the child to play.   If this works, then keep on making lots of different mini-videos for the child to watch so that the toy play can expand from the learned scripts.    If it doesn’t work, show the video some more times.   Try it again using different toys.   Some of the professionals you consult may know how to help you with VM.  Do ask them for help and advice.   For some children VM is a very powerful teaching tool.

What is Video Self-Modeling?

This is when you film the child doing an activity, edit out all the bits where things do not go well, and make a video of the child being succesful at eg soccer, pronunciation, peer play.   You can fake the filming to make the child look as if he can do a new skill  eg being able to count, gross motor skills.   Then show the child the video 2-3 times and see whether it helps him or her master the new skill.

Isn’t watching TV bad for our kids?

Yes !!   Watching too much TV certainly is a problem, and many of our kids with ASD become real addicts.   But there are therapeutic videos to watch and many of our kids are visual learners so it can pay to use the natural advantages they have to help them learn.    Don’t hide the TV and videos – work on the programming !

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Inspiration from a YouTube video

by Seana Smith on Tuesday, November 17th, 2009

Here is a very lovely video from an Autism Association in Illinois, USA.   I’m sure this will touch the hearts of everyone who watches it.    I love seeing such simple yet powerful messages about ASD, and this is delivered really beautifully.

Ahhh…..  the makers of this have spoken for us all.    It’s one to share with family and friends and especially with those who don’t already know and love a person on the spectrum.

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