March 7th, 2010 — News
It’s not often that I see a book which sits so comfortably across several age groups and brings useful and different information to each. Squirmy Wormy is such a book.
Squirmy Wormy is, at first glance, a picture book which deals with Autism and Sensory Processing Disorder.
The “story” itself is a mere 18 pages, so it’s a quick and easy read but don’t let that deceive you. Beneath its storybook exterior, Squirmy Wormy provides a wealth of explanations and tips. It’s a book that you and your children will be going back to, time and time again.
Suitability for Young Readers
Young readers will find Squirmy Wormy easy to read because there’s only about five lines of new text on each page plus a little repetition of sound-words. None of the words are particularly difficult, making it a great book for good-reading children as young as kindergarten.
If your child is a slower reader, the book is still good reading at grades three and four. It’s also a great book for reading aloud. In fact, it’s the sound words like “flappy, flappy, pinchy, pinchy, hit, hit, hit” which make it a particular joy to read to an audience.
A Book with a Difference
What makes Squirmy Wormy so different from your average picture book though is that apart from having a generally non-linear story from which you can simply read one or two relevant pages without having to re-read the entire story, it offers a great deal of advice for parents but more importantly, for children.
One of the main aims of this book is to encourage children to help themselves.
Taking a child’s point of view, it’s easy to see the advice for given situations.
For example; one page reads,
“Sometimes I just get upset and confused and I just don’t know what else to do but scream or cry”
The advice follows on quickly;
“But I just close my eyes, take a deep breath and think of something that makes me happy.”
There’s also a reassurance of normality;
“It’s okay when I feel upset. I will feel better soon.”
It’s great that the book provides reassurance because all children, particularly those on the spectrum, really need constant reassurance. They need to know that they’re okay and that other people experience the same sorts of feelings and frustrations that they do.
The advice is great too. Sometimes it’s directed at parents and sometimes at the children. It’s always understandable and it’s always achievable. Sometimes the advice suggests breaks for the child and sometimes it provides interesting ideas for parents to implement. Best of all, a child who is reading the book may begin to implement or recommend their own therapy for a given problem.
The illustrations in the book are all bright and colourful. I was amazed to find that Lynda did these as well. They’re very easy for children to relate to and there’s a lot of detail in them. My children had great fun pointing out various bits and pieces and there’s a unique textured look to them which makes them even more attractive for those on the spectrum with a fascination for patterns.
I read the book aloud to both of my children and they stayed attentive throughout. Best of all, it provided me with some great ideas and opened some enlightening discussion topics with them. It was interesting to be able to point to pages and ask them, “do you feel like that?”.
I’d recommend this book to all parents of children on the autism spectrum, with SPD or even with non-autistic conditions such as learning difficulties and ADHD. There are a lot great ideas in it which are suitable for a much broader range of children.
Professionals working with special needs children really need to get a copy of this book too. It’s one big step on the road to self-management.
Honesty Clause
I was sent a copy of this book to review at no charge.
March 5th, 2010 — News
Last year I wrote a couple of posts (here and here) criticizing Polly Tommey for pulling expensive publicity stunts that resulted in her meeting with Prime Minister Gordon Brown and his wife at Downing Street. She presented herself as just a mother speaking for thousands of other mothers. Her remarkable success was contrasted with the apparent failure of autism organizations to [...]
March 4th, 2010 — News
The UK government have published their strategy for autistic adults, Fulfilling and rewarding lives: the strategy for adults with autism in England. This was welcomed by the National Autistic Society.
The National Autistic Society (NAS) is pleased to welcome the publication of the first ever strategy for improving the lives of adults with autism in England.
Last [...]
February 27th, 2010 — News
Last time I looked at and played “devil’s advocate” to, the argument to absorb the Aspergers label into the wider Autism label.
In this post, I want to look at the case “against”.
The Autism label is Tainted
This is by far the most “vocal” argument against the merge. There’s certainly an element of truth to it. I don’t think that anyone who really knows autism will try to suggest that the word isn’t tainted.
Stop anyone on the street and ask them what “autism” is. You’ll get instant recognition. They’ll tell you about children who can’t function without adult helpers and if adults are mentioned at all, they’ll tend to be the “diapered” and “institutionalised” variety. Usually, people on the street don’t even think about autistic adults. It’s like the “problem” simply goes away.
If you try to suggest that there are adults on the spectrum who don’t live in institutions, you’ll receive a blank stare and then muttered assent; “oh yeah, like rain man.”
Thanks hollywood, thanks autism speaks. You’ve managed to confuse the world so that an image of 5% of the least able members of the autistic community represents the entire community. The word is most certainly “tainted”.
On the other hand, if you ask people about Aspergers, particularly if you don’t say “syndrome”, you get blank looks and mostly a lack of recognition. If anyone does recognize it, they’ll usually respond with words like “quirky”, “geek” or “nerd”. Believe it or not, this is considered to be a positive stereotype and I suppose that, compared to the stigma of “autism”, it probably is.
I read somewhere on a blog of someone claiming Aspergers as a “successful brand”. I feel that treating our syndromes as brands is probably carrying recognition a bit too far but I’ll leave that for the commenter’s to dissect.
The question here isn’t whether or not the word “autism” is tainted but rather whether the solution is to abandon it in favour of a new label which while not necessarily “tainted” is certainly beginning to associate with a particular stereotype.
I have two main thoughts on the tainted argument;
- Will we feel the need to abandon this new label in another 20 years when it too becomes “tainted”?
- Assuming that we “cream off” the diagnosed aspies, what happens to the remainder of the autism community? What about the high functioning autistics – are we simply going to abandon them even though there’s almost no difference between “our diagnosis” and theirs.
The Elitist Attitude
This is the “against” camp’s answer to the political correctness garbage of the “for” camp – and in my opinion, it’s just as useless. In this case, it refers to a very vocal minority group who don’t want to be in the same category as people with very severe autism.
It’s similar to the “tainted” theory (at first glance, it seems the same) except that in this case the people aren’t so concerned with the public predjudice as their own. They’re not worried about what other people think. They’re worried about what they think about themselves.
In this case, the whole argument is moot because it’s clear that these people will continue to refer to themselves as “aspies” regardless of what DSM V says.
One last point on this argument. It’s not just aspies. I’ve actually read some posts from the parents of children with severe autism where they’re complaining about high functioning people “stealing” their funding and drowning out their pleas with “high-functioning babble”. I’m not sure that such an attitude is warranted but it certainly harks back to one of my earlier points about making sure that all voices on the spectrum are heard – not just ours.
The Strain on Services (and Removal of Services)
The possibility of placing a strain on services is very real. Right now, in Australia, there is greater support for High Functioning Autism than there is for Aspergers even though they are considered to be “clinically identical” once early intervention has ironed out the speech delays.
The “strained services” argument suggests that if the same amount of money is spent on services for autism but the playing field is leveled in terms of requirements, then those who are currently receiving less funding will receive more. Of course, the money has to come from somewhere, so it makes sense to suggest that those who are receiving more funding now will receive less under the new scheme.
This is the crux of the problem. For the most part, people who are already receiving higher amounts of support generally require greater support. It’s true that aspies need more support too but not as desperately as people with Kanner’s autism.
Of all of the arguments in the “against” camp, this one is unique because it is not discriminating against the more severely handicapped autistic people but is actually supporting their right to greater services.
The other part of this argument suggests that many people who previously fitted under the banner of aspergers may find themselves no longer on the spectrum – and thus no longer eligible for support. This theory comes from the idea that the boundaries between neurotypicality and autism will be solidified and that some of the diagnostic criteria will be revised.
At this stage, I’ve seen no evidence to suggest that this is definitely the case but there are some interesting rumors. In any case, it’s unlikely that anyone will have their existing “labels” taken off them (they’ll just be migrated to the new wording) but it is much more likely that new people who would have received a diagnosis and support under the old system may find themselves “too high functioning” to qualify.
Confusing Changeover Period
The last argument I want to cover is the changeover period. It’s another good argument. Not that long ago, one of the major Australian banks had a rebranding exercise. They kept their name but changed their logos, slogans, forms, website and general branch appearance. The whole thing was a massive undertaking which pointlessly squandered a huge amount of money. In the end, most people couldn’t see how they could justify the expense.
I’m wondering exactly how much money this changeover will cost in terms of re-branding, retraining and redrafting the rules. I know that the majority of the money spent on this activity wouldn’t have gone towards services anyway but I’m willing to bet that somewhere, somehow, service disruptions will eat into support funding.
Consider for example, your local community support services centers. These operate with very limited funds and will need to spend time, money and resources coming to grips with the changes in the DSM. Instead of spending money trying to improve their programs for support, the money will go towards less useful (essentially pedantic) training.
I also wonder exactly how many people will “slip through the cracks” when the labels change? Caitlin added a fascinating comment against my last post which highlighted exactly this problem. Some schools won’t accept “autistic” children but will still accept ones with “aspergers”. What happens when the label changes? Will the schools make allowances? Probably not.
The Solution?
I’ve thought long and hard about the solution to the problem and I’ve come to the conclusion that neither camp is correct. I’ll save my opinions on this for another post though.
February 25th, 2010 — News
There are many symptoms that an individual with autism can experience; however, one of the most hard to understand is what has recently been named Theory of Mind. This problem has been discussed and studied a lot, but it is still a real mystery. Due of Theory of Mind problems, the social interactions are even more difficult for autistic people.
Theory of Mind causes these social behavior difficulties in almost every aspect, from playgroups such as kids and even with the world of adults. The concept behind Theory of Mind is that autistic people will not recognize that other people may have different ways of looking at things.
Although an autistic people may not be egocentric, but he or she probably inherently assumes that all the other people should think, feel, and know the same things he or she thinks, feels, and knows.
Most autistic people have an inability to lie, which of course it is not necessarily a bad thing, but in this world of lies, that is not natural at all. They don’t even think in lying as an option because they think everybody else knows the truth as they perceive it.
Because of this inability to lie, they also do not realize that other people do lie and may even be a lot. In fact, it is a rude awakening for autistic people when they find out that others lie or are not good people as they think everybody else is. This is especially problematic when they first experience this in the business world, and many autistic people do not know how to deal with it.
Since they believe that everybody else perceive the world as they do, it is difficult for them to put themselves in others’ shoes. Of course, this can be taught, but it is not an easy process, since, those with autism have to constantly remember to do, it did not come naturally.
Even kids have problems with Theory of Mind-they find very difficult to play games with other children that require keeping a secret. They also need to be reminded of sharing and releasing aggression in ways that are not harmful to other people.
Some of the frustration an autistic people feel from this inability to understand why others are not reacting in a situation in the “Right” way. Autistic kids also cannot understand why people don’t know certain facts-if they know it, so everybody else should know.
Theory of Mind still needs to be studied in order to be able to understand and treat this symptom of autism better. Right now, the best teaching method is continuous social interaction, along with role-playing and other games that require autistic kids to look into things from many angles.
Until modern medicine finds a better answer to Theory of Mind problems, the best thing to do is be patient with autistic people and be prepare yourself to explain your thought process to them, if you really want to help them.
What did you think of this Theory? Have you ever faced any individual with autism? If you do, remember why they take time to understand how to behave like others do.
