This week I was lucky enough to spend three hours hearing Professor Tony Attwood speak. This is the third year running I have been able to do this and it is something I am extremely grateful for.
My local Early Intervention Service, who have been an invaluable help to me, have Professor Attwood visit every year. As my boys are both at school I do not use the Service officially any more but was lucky enough to again receive an invitation to this event.
I think most people who have a child or family member with Autism and in particular Aspergers syndrome know who Tony Attwood is. For those who don't or want to know more here is a link to his profile on his web page.
This year it was Tittled "A Conversation with Tony Attwood " and that is what is was. A small room with about 30 people attending. We were able to ask Professor Attwood questions that were specific to our children. Of course most answers were of interest to everyone.
For this blog post I thought I would share some of the questions, and of cause answers, with you all and also some of Professor Attwoods lovely insights into our amazing children. Remember this is my interpretation of Professor Attwoods opinions. I have no qualifications except that of a parent...
Sleep problems are something most children with ASD have in common. Apparently there are a few reasons for this.
A normal; person has four sleep stages. The first three are Non REM sleep the fourth is REM sleep - The deep sleep stage where dreams occur. Some people with ASD are unable to achieve REM sleep, some have seizures while they are sleeping and for alot they do not know how to go BACK to sleep! I have one of those... If his eyes open he is UP and ready to party!
Even more common in ASD people is trouble just getting to sleep. Apparently for Neurotypical people it takes about 20 minutes to get to sleep. For a person with ASD this can be anywhere from 45 minutes up. My six year old takes 2 hours!
Then there are sensory issues...Is the room too bright (over stimulating), too dark, too hot, too cold. Are the sheets itching? Are their pyjamas too tight?
How to fix it is a more complicated matter. What I learnt on the day is...
Melatonin will help reset a body clock in SOME children. It is a natural substance but Professor Attwood believes it should only be used for a short amount of time. It should take 3-4 days to reset the body clock. Once the clock is reset he recommended ceasing use after day 7. If it hasn't worked by then it won't. He also said that although it is a naturally occurring substance there are no studies on long term use.
Professor Attwood also recommended a sleep clinic for those children that have chronic sleep problems. I was always under the impression that children with ASD did not need as much sleep as a Neurotypical child. NOT TRUE! They do and when they don't this can contribute to behaviour problems. He said to "fix"these chronic sleep problems you need a report from a sleep clinic so you know HOW your child is sleeping and where the problems are. This is only for chronic sleep problems. Just wanting another hour or two does not qualify and Professor Attwood did not even recommend Melatonin for these minor issues.
In order to cope with the anxieties and stresses about the chaotic world around them, kids often obsess and ritualize their behaviors to comfort themselves. While some kids may spend their time intensely studying one area, others may be compulsive about cleaning, lining up items or even doing things which put them or others in danger. Not adhering to these rituals can be traumatic and often impossible for them. Professor Attwood explained how most of these rituals start...
There is a book called The Curious Incident of the Dog in The Nighttime. The main character is a 15 year old boy with Aspergers. This is an excerpt from the book..
3 red cars in a row mean that it is going to be a Quite Good Day. 4 red cars mean that it is going to be a Good Day. 5 red cars mean that it is going to be a Super Good Day. And 4 yellow cars in a row mean that it is going to be a Black Day, which is a day when I don't speak to anyone and don't eat my lunch and Take No Risks, because yellow is the colour of custard and double yellow lines and Yellow Fever which is a deadly disease.
Now you can see why he hates yellow so much but why are red cars good? People with ASD crave control, they like to know whats coming and HATE unpredictability. Maybe one day the boy had a really good day at school. What made this day so good? He was unable to attribute it to anything abstract and may have remembered seeing five red cars that morning. BOOM! Five red cars means a really good day.
Of course this makes absolutely no sense to the rest of us but perfect sense to the boy with Aspergers.
One of the Mums asked about her sons obsession with Super Heroes and in particular taking on their persona. This was becoming a problem as he was demanding to dress in character most of the time. Melting Down if denied access to his costumes and even refusing to attend his Early Intervention class until he was dressed in one of their costumes
I have a similar issue with my 6 year old. His obsession was Police clothes for almost three years and is now Army clothes.
Professor Attwood explained it like this. Super Heroes are cool. They have good values they are respected and no one ever makes fun of them. ( I guess this goes for police men and Soldiers too)Why wouldn't you want to be one. For some of our kids being THEMSELVES is simply too hard So they use these persona's to quell their anxiety about being accepted. It can be a good thing and a way to help them socialise but when it becomes an obsession and totally controls them and you, it's time to intervene.
Aspergers and Girls
This was one of my questions and is of particular interest to me at the moment. I have two boys with Aspergers Syndrome and one without. I also have aa almost four year old daughter who is an absolute delight. I had a few concerns early on when she first started moving around, she liked to line up DVDs and her dolls. This of course freaked me out. It stopped and I relaxed.
In January this year she started preschool. From January to September she did not speak a word to ANYONE at school. The only time she spoke was when I was present and only to me. She also displayed this behaviour in her early years when being cared for briefly in the Early Intervention Daycare room, while I attended workshops etc. At that time we put it down to age and shyness. There are also certain family members and friends she does not speak to.
I have been very concerned about this and after explaining all this to Professor Attwood asked How likely is it that Darcy also has Aspergers?
He explained that girls are extremely difficult to diagnose and present very differently to Aspie boys. Girls are fabulous fakers. They watch and learn. They practice what they have learnt,ie with their dolls, and they mimic. They have fabulous imaginations and often live in a land of make believe. When they play with toys they are often acting out what they have learnt. They know they are different but will do everything they can to not let any one see it. They are usually compliant in early childhood settings, not wanting to draw attention to themselves. They are often intelligent and excel at school but friendships are hard. they usually have one very good friend.
Selective or Elective Mutism is a very common trait in young Aspie girls as it is a way to deal with their extreme anxiety. They will not say I don't want to go to school, They will say they are ok because they think that is what they are supposed to say.
As to my question of how worried I should be? Apart from holding my breath during the above description, the chances are dependant on other things.. She has two older brothers who have Aspergers, this means she has a higher likelihood of also having it. That decreases a little bit because she is a girl.If she was a boy it would be virtually a given she would be Aspie. Because I am an older Mum (36 when she was born) it is more likely she will be. Because my Husband was also older it is even more likely...Not looking good.
Professor Attwood then told me that a diagnosis may not be possible as it may not even be apparent she has Aspergers until late Primary School, Early High school. This is danger time for Aspie girls. Socialising becomes more difficult and they can have breakdowns unable to keep their facade going any longer. You then have all the lovely problems of puberty and predatory males to deal with.
His advice, get her assessed. Start addressing the Anxiety and watch very closely.
I will now be scouring Amazon for a copy of Professor Attwoods book on Aspergers and Girls.
I also asked a question about medication and in particular the medication my son takes but that is another story and as I know a few people struggling with this topic at the moment will devote a blog post solely to mine and my sons experience and Professor Attwoods advice.
I hope some of what I have shared is helpful. I think most of what I have covered and more is in Professor Attwoods book The Complete Guide to Aspergers Syndrome. I have his first book which is brilliant and apparently this one is even better.
For all of you with a child on the Spectrum I wish you luck on your individual journeys and leave you with my favourite Tony Attwood quote:
“The trouble is, people will say
‘people who suffer
from Aspergers’. No, you don’t suffer from
Aspergers, you suffer from other people!”