Autism Memory Artist, Stephen Wiltshire

Something I shared on facebook recently.


http://www.bbc.co.uk/news/uk-england-london-14115619

an asperger adventure

My son and I have both finished reading the book Blue Bottle Mystery: An Asperger Adventure by Kathy Hoopman which is the first book I believe we have both read, independently. Admittedly I had to encourage him to read it because all he really wants to read right now are Geronimo Stilton books. He can read at an adult level now but up till recently I did read aloud to him in additon to his own reading. We both finished this one in under an hour, its an easy and pleasant read for children (and adults!). What really jumped out at me was Hoopman's understanding of a boys life with asperger's, as the main character struggles at school in many of the same ways my son does.

 The story certainly echoed some of the problems we experience as a family like anxiety with change, and those who don't understand the problem. Sometimes I don't understand the problem! Ben, the main character's miscommunication with his teacher is very well written I think, highlighting how difficult it must be to have asperger's and try to connect with people. Despite Ben's best efforts to behave and please his teacher, he often gets it wrong, trying desperately to get it right he still gets punished. I know my own son has experienced this many times and how frustrating it must be to be accused of being naughty when you are just trying to work out one of a thousand possibilites in your mind, work out what comes instinctively to neuro-typical people. Its also a nice little adventure and Ben does have one good friend in the book, who helps him and seems to understand him. My son related very well to this as he also has one or two friends who do seem to 'get' him.

This is a simple book  that offers good insight into the life of an asperger boy and autism and I would love so very much if all of my son's classmates read it!!

Kathy Hoopman is a primary school teacher and mother of three in Queensland Australia. If she doesn't have any children on the spectrum, she certainly has a great grasp of it.

Aspergers

We finally have the diagnosis that we've come to expect in recent months. My son is on the autistic spectrum, and has met the criteria for Asperger's syndrome. Its not a suprise and now we've been told that the local ASD unit will come to the school to help with planning and support for him. We have already started the appeal for the statement but I've been told that it might not be necessary if this ASD unit provides additional support.

Hard Facts and Harder Decisions...

Pervasive Developmental Disorder: according to Wikipedia (which provides a more lay person's language to understand it), PDD refers to a group of five disorders characterized by delays in the development of multiple basic functions including socialization and communication. The most commonly known PDD is (1) Autism, with the remaining identified as (2) Rett syndrome, (3) Childhood disintegrative disorder, (4) Asperger syndrome, and (5) Pervasive Developmental Disorder Not Otherwise Specified (or PDD-NOS).

This was the initial conclusion of my son's psychiatrist yesterday. He feels that my son has definite autistic tendencies (and actually sounded worse than I felt about it), and will need to be assessed/examined by a paedeatrician, a specialist in ASD's and possibly ed.psych again, within the next 6 months with the aim of a statement of special needs at the end of it all. In the meantime, the doctor felt that my son's hyperactivity was the most disruptive feature that could be addressed immediately, with medication of course.

I have never been inclined toward medication, unless I'm in absolute agony with no further options. However, my husband has the feeling that if it were something like cancer, we wouldn't turn down conventional medicine, if that meant helping my son. So I now have to weigh the pros and cons of medication for ADHD very carefully. I am more inclined to allow a trial period, but I do not want it to carry on into his teen years, nor do I want it to serve as a replacement for other possible treatments. That said though, the psychiatrist said his initial feeling is that my son's problems stem more from the autistic side, which could mean the medication wouldn't work anyway. I have to agree that this too was my intuition, before he even suggested medication.

So we are looking at another six months of testing, waiting, etc. but thankfully some of that time will include summer holidays. I can't say I feel much better after having heard the conclusions of the psychiatrist's observations, but something has ticked over in my brain. It is a bizarre thing, our brain, and how we can dupe it, or rather perhaps, persuade it to accept things like a placebo to do the work we want it to for instance. In my case, somehow hearing that my son had something more going on, something more complicated perhaps than Asperger's or ADHD, that I hadn't thought about, hadn't considered being as complex, brought me to yet another level of awareness.

I have found myself short tempered lately, easily frustrated by my son's behaviour and was beginning to think I may never feel anything other than this way. But I have been able to step back, and really think about the implications of having a neurological disorder. I can see how frustrated he is feeling, and when I let go of my own frustration, he relaxes, really relaxes, and that is so important. I can't excuse every bad behaviour and I have to be firm, but I can now also just relax, as he is just my son, as he has always been and always will be.

It also affects my daughter, as she is like a little Richter scale measuring everything that happens in the house. She is far more intuitive and aware than my son was at this age (2), but her language development is a bit slow, and I am conflicted as to whether to bring her in to see someone. It is developing for sure, and faster than my son's did, but will she have similar issues? Its a lot to deal with and my gut says to wait until she's 2 1/2 and then decide, as at that point she'll be able to attend the Steiner Kindergarten for two hours in the afternoon, and if it is obvious that she is having problems, then that will be the time to deal with it.

One part completed

We have received what appears to be one part of the referral help that my son is expected to receive. This came in the form of Behaviour & Attendance Mainstream Programmes, which means my son will have a key worker helping him in school, at least I think so. We have the follow-up visit with the Psychiatrist this week, who has said that my son should definitely have a statement. I know this is good news as it means helping him in school, but I couldn't help feeling a twinge of despair as I read this letter.

I never thought that I'd have a child labelled with 'behavioural problems'. I find it distressing a bit, as most other parents would view this as a parental failure on our part, and probably an intelligence issue on my son's part. But this is not the case. In fact last week he received the head teacher's award for maths performance. This was so pleasing as my son has been saying that he can't do maths, when in fact, according to his teacher, he's quite skilled at it. I picked up How to help your autistic spectrum child by Jackie Brealy and Beverly Davies at the library this weekend, and have found it pretty helpful. I found I could especially relate to the statement "A lot of parents get stuck into the trap of trying to make thier child behave in a 'normal' way, rather than trying to understand what the problems are". I am working on that, on trying to function according to our internal compasses and seeing my son as the unique individual he is, without letting the outside judgements and labels get in the way.

I'd also like to thank Inspiration Alley for commenting about the issues we are facing, and I will be reading her blog alot this month, as it is Autism awareness month, and many folks are blogging each day this month about it. I'm not up to that task, but I am definitely interested in reading and learning more, and this in one of the situations where the internet is so helpful, so easy to share and learn from experiences, instead of having to muddle through alone.

World Autism Awareness Day

The UN has declared today, the 2nd April 2008, World Autism Awareness Day which has now become meaningful to me as my son is on the autism spectrum with Asperger's syndrome. My own awareness has grown because of it, and for that I'm grateful. My husband as well, who also has some signs of Asperger's but was never diagnosed, has discovered a new awareness of himself through learning about and watching his son grow. Its a mutual path of growth. I still consider myself a newbie to all this though, and have so much to learn, grasp and understand. We are meeting with the child pyschiatrist in two weeks, to begin the process of statementing. He did say that more questions than answers have been raised after his visit to my son's school, so I'm wondering what that will entail. I have read a couple of wonderful books recently, Born On A Blue Day by Daniel Tammet, which is written by an absolutely amazing man about his own experience of living with Asperger's, and Finding Ben: A Mother's Journey Through the Maze of Asperger's by Barbara LaSalle, which did make me cry.

This is the week

This is the week that the psychiatrist will be visiting my son's school to assess him and the school and I can't wait. I hope it will result in something getting done. Initially I thought the school was being helpful in trying to get my son assessed for an autistic spectrum disorder, but now it seems to me that really, they are not all that on top of things.

The past few weeks have been absolutely awful. My son has been tearful, angry, super belligerent and wanting to stay home most days. I've been faithfully told by friends daughters, (in his class and older ones) that my ds is constantly being picked on. This is causing his intense frustration as he desperately wants to fit in. Its also increasing his motor tics it seems, which is just placing him further apart from everyone else.

I found a recommendation for this book, Diet Intervention and Autism by Marilyn Le Breton, and have read through it this weekend. Its about implementing a gluten free and dairy free diet. This was hardly new to me as we were vegans for awhile, but never completely gluten free. I have noticed the difference in myself when I avoid eating bread, as my skin stays clear and I'm not bloated, sniffly and sluggish. I also find that when I do eat bread, I want to eat more and more. It makes perfect sense to me then, to extend the theories about food intolerences to behavior issues and autistic spectrum disorders. Even though I felt we were eating a healthy vegetarian diet, there's always more to learn and we still find ourselves in an food rut every now and again.

So this week, we are slowly changing our diet incorporating gluten-free bread for my son's lunches, as we can't just leave him without a sandwich, as that's all he'll eat - and gluten free pasta, another favourite dish. The dairy as well, will be replaced with soya. Like the author's son that's illustrated in the book, my son is addicted to yogurt and fromage frais. Its his morning breakfast ritual, his snacks, etc. So now its soy yogurt. We used to buy soy yogurt all the time, but then started with yogurt and fromage frais because it didn't seem to negatively effect him, and was cheaper-- considering how much he eats it! He's not much for cheese now, so that shouldn't be a problem.

I also realised that having switched brands of omega 3 supplements for him, the ASDA brand that I bought has aspartame in it, whereas Equazen did not. The book mentions aspartame as a trigger for allergies and I feel that it has been partly to blame for the horrible two weeks we've had, as that's how long he's been taking it. So no more of that ASDA brand, even though its considerably cheaper. I have been careful to avoid artificial sweeteners and colourings in the past, but somehow missed this one.

Denial or Acceptance?

Why didn't we take our son in for an assessment sooner? He's seven now. Why didn't we? I don't know. The doctor asked yesterday.. well he asked if we had noticed anything when he was younger and had we mentioned it to a doctor. Yes and No.

Perhaps it was some deep denial. I had an acquaintance who suggested to me that my son was somewhat autistic at age two, and I quietly but quickly cut her out of my life. She was not an expert in anyway, nor did she have any personal experience, so I felt she was judging my son unfairly. At the time he wasn't talking alot, not as much as the kids in his small play group, and definitely not as much as her daughter. He liked the other mothers in the group, but not her. I think he sensed her judgement, or the fact that she was looking at him to see 'what was wrong' instead of as a little boy. And now of course I cringe at the thought that perhaps she was right, perhaps she saw what I as a new mother could not or did not want to see.

My son never did well in groups, always running off and doing his own thing, never really wanting to sit still, except when I read to him, but we took that as high-spirited, strong willed, etc. But he is loving, not destructive, affectionate and was reading at age 6. If he hadn't started school, I'm not sure we would've changed anything at all. Denial, maybe a bit. I think we accepted him for who he is. The fact that we will not be medicating him no matter what the diagnosis, means that not much will probably change in him. I do think though, that any help in terms of therapy for him, a support group for us might be a good thing. Since we are fairly isolated and don't really get any practical support from family (mine in America, and his about an hour away) it would be good to meet other people in a similar situation. Of course my son as of right now doesn't think he has a problem, its everyone else! Though he did say yesterday that he's tired of being left out and feeling like no one understands him at school.

The doctor didn't have much to say really. He said he will refer us somewhere, I think its family psychiatry instead of psychology which is what we met with last week. I can see now how it is that its taken some people years to obtain a proper diagnosis. What a convoluted time wasting system this is. So now we wait, again.