Sunday, 14 June 2009

High Functioning Autism?

Another week over and time is still flying past at the speed of light. Rosie turned six months old this week. I really can't quite believe it. Where did the time go? How can it be possible? And how can it also be possible that by the end of the month I shall be the mother to a 14 year old!?? I was only 14 myself yesterday, wasn't I? Here is a photo of my first baby and my newest baby together.

After my last blog post about Barney I have been in to the school to speak with his teacher. After discussing my concerns with our GP she decided to refer him to a specialist as she feels that he has some kind of high functioning autism. I had always known that Barney was an individual sort of character, but it has become more obvious that when he is under stress he copes in a very different way to his siblings. Anyway, the doctor said I ought to speak to his teacher and see if she had noticed anything. I honestly expected her to tell me that Barney had settled in fine and was doing just peachy. I was quite taken aback when I went in to speak to her and she had four pages of notes prepared on things she had noticed about Barney over the year. I was both relieved that it wasn't in my imagination, and shocked that she had noticed so much. We talked for about 40 minutes and the more we spoke the more I realised that Marty and I naturally compensate for any of Barney's difficulties, because we know him so well. In the school environment it is harder to do so and he struggles more obviously.

The teacher asked me to accompany the class on a trip to the dentist so that I could observe how Barney interacts and copes socially. At home he is an extremely chatty child, as he obviously feels comfortable around his own family. I was quite shocked on the school trip. In almost 3 hours he did not speak to a soul, nor make eye contact. He kept his head down and seemed to be totally in a world of his own. When it came time to choose partners to walk with he just stood until everyone else had chosen, and then got lumbered with whoever was left. He then refused to hold hands with his partner, and instead made the partner hold onto his coat. Any contact with another child was obviously extremely uncomfortable for him. Apart from that he seemed blissfully unaware of any difference, in his own little world.

The teacher brought out lots of points and said that if there is any change in the days routine he needs one on one attention to cope with it. She wants to make up a routine chart and have it laminated to his desk, with details of what happens each day of the week, so that he knows exactly what is happening when. She has put him on a 'concern list' and wants him to attend some sessions with the educational psychologist when he starts P2. She is keen for him to be seen and assessed for autism/aspergers. The more I have read about it, the more it all makes sense to me, and Marty. I have ordered some books to educate myself a bit more about it all. I know that Barney thinks differently to us, I just don't know how to deal with it.

This last week I've read a lot on the internet in various autism forums and sites, and have noticed that Barney has been a lot calmer just by my change in attitude to him. For instance, quite often his way of dealing with things may seem like disobedience or shyness, and Marty or I might try to force an issue with him that really doesn't make sense to him at all. Then he ends up having a panic attack, trying to throw up, hyperventilating and just generally not coping. Yesterday we were at my sisters house and there were two children there that Barney didn't know. He whispered to me "Mummy could you go past those children and get my toys for me because I can't walk past them". Of course my normal reaction was to say to him "of course you can honey, just go get your things" but when I said it his face came over in panic. Usually I would think it was shyness and try to encourage him to face his fears, resulting in what appears as bad behaviour from him, or panic. This time I said to him "OK honey, I will get that for you", and the look of relief on his face was heart wrenching. He was so grateful that I understood and wasn't forcing the issue. Later the new children asked to play with Barney and his toys. He had brought 33 specially chosen and counted little cars to play with. He looked horrified at the prospect of playing with the children and sharing his precious toys, but he said 'OK' and gave it a shot. But Barney has his own rules and finds it extremely distressing to play with children who can't follow or understand his rules. He gave the boy 12 of his cars and said "you can play with those ones". That was his rule, "you have them and I will have these". And he could cope with that. But the boy kept taking cars out of Barneys pile, and Barney was getting noticeably stressed about it all. Once again I tried to understand it from his point of view. In the past I would have ignorantly forced him to share his cars with the boy, thinking that I was teaching him about sharing and how not to be selfish. Barney was getting so distressed that he was desperately gathering up all his cars and trying to sit on them, in a big pile in the middle of the room, rather than deal with the horror of playing! I asked the other boy if he could play with the 12 cars he'd been given as that would really help Barney relax. The boy agreed and little Barney once again had a look of heart breaking relief on his face. I felt a bit ashamed that I've been forcing him to do things that he just can't handle all these years, without knowing. Barney then relaxed and they all played fine. Eventually he went outside and left the cars with the little boy.

Part of me wished I could explain to the little boys mother that Barney is possibly on the autistic spectrum and thats why he was having a hard time playing. Anyone who doesn't understand that would just see a mother pandering to her child and letting him behave like a spoiled brat, but its not like that at all.

I've noticed since explaining to Badger and Tarja that Barney might have some difficulties, that they have both been a lot more patient and understanding with him. We have had some quite long discussions about what it means to be autistic and why Barney thinks differently to them. Badger would always argue with Barney and frustrate him, work him up into a frenzy. But this week he has been much calmer with him, understanding that he is not just being a difficult child, or a spoiled brat. They both seem to have a real tenderness towards him when hes panicking or shouting that they didn't have before.

I could write for hours about the ways Barney is different to us, and why we sought advise from the doctor. My brain is fried thinking about it all. A lot of people who don't know Barney as well as we do seem to think I'm jumping to conclusions or making a fuss over nothing. But I know my child better than anyone else, and I damn well know what I'm talking about. Off the top of my head, here are a few of the issues (for want of a better word) that he has had lately....

Obsession with time and watching the clock; lack of patience and unable to wait for things; unable to wait his turn; unable to wait to speak when he wants to say something; panic at change of routine; high pitched voice; takes a bowl to bed; lack of eye contact with other children or unknown adults; plays by own rules and can not handle imaginative free play with others; lines up cars in sequences; extremely uncomfortable with body contact with untrusted people; issues with eating (only likes raw cold food, doesn't allow food to touch on a plate); anger and panic if dinner is prepared without him knowing in advance what it is; extreme panic at any change in routine; takes everything that is said literally and will have to clarify whether someone is joking or being sarcastic; gets caught up in what people literally say and can't move on from it; did not walk until age 2; desperate for close friendships but unable to handle other children; prefers to play alone at school than get to know people; sits hunched over his desk and walks hunched at school, sensitivity to sound (panics at noises such as baby crying, cymbals at school, loud music - teacher said he often sits with fingers in his ears), can not understand other peoples point of view no matter how hard you explain it to him; terrified of things like the washing blowing away or the car running out of petrol. I could keep adding to this list for days I think.

Anyway, my point is that I love Barney. He is the most individual, unique, fascinating character that I know. And I don't want to change him. I just want to understand how he feels so that I can make sure I don't do anything, through ignorance, that sends him into panic or makes him feel misunderstood. I can't wait to read the books I've ordered and find ways to really help him grow and learn in his own way. He is a little work of art, and brings joy and sunshine to our lives every day. Everyone who meets him falls in love with him. He's just so lovable!


Tammy said...

Once you learn how to deal with things, and help him to deal with things, everything will be alright. I know many moms with high functioning Autistic children, and one of them teaches them as well. I think Michael has a form of it too, but we haven't had him tested yet. It's all in making him feel comfortable. I think that schedule on his desk will be wonderful. One at home too might help, along with a menu plan. Maybe he can help you make one out, and then just try and stick to it for meals.

Thinking back, I feel very special that he felt somewhat comfortable when he was here. I know that he did have some issues, but we had very wonderful conversations, and he seemed to play with the kids really well.

I love his unique-ness, and I know that you do too. In time, this will all work itself out, and it will be good for all of you!!

Let me know if you want me to put you in touch with the moms or teacher that I know. : )

Loopy Loo said...

He really is the sweetest little boy - I feel very privileged now as he has always been extremely welcoming and friendly to me. I hope it won't be too long before you get a definite diagnosis xx

Sharon said...

It's difficult when we realise that they are following a different path to what we might have expected. But it's exciting too, so if it's autism, you know I'm not being flippant when I say, welcome to a wonderful world!

Don't worry about telling people that Barney *needs* to do some things in a certain way.

You might like this post by a friend of mine.

Maddi said...

Well if Barney does have some kind of autism / asbergers then he's in the best family to cope with it. I know you will all adapt however needed and Barney can live a happy life with you all. And other people will be understanding, if only curious about what makes him tick differently to their own children. It is another opportunity for people to see what a wonderful mother you are, nothing else.

Tabi said...

as hard as hearing something out loud can be, this surely confirms your beliefs for a long time. If he does get a diagnosis then you'll get the support both you and he needs, see this as a positive episode in your life. It sounds like adapting your approach is working wonders- this could be the doorway. You know how wonderful he is, think how wonderful he'll realise you are when he sees you understand his world. Good luck, you know you are always in my thoughts x

Anonymous said...

hi all,
i empathise with you....We too have a son whom everyone assumes is a brat but who has autistic spectum and a.d.h.d.
It's very hard to cope with and added to that everyone's assumption that you are bad parents.
Good luck and god bless , i know you are lovely people and lovely parents so barney has the best start .

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