Friday, 11 April 2008

A Little Bit More About Autism

Firstly I like to say thanks to everyone who has been reading my posts on Autism and thank you all for your kind words and support too. I'm really not a hero though, I just do what most mothers would do for their children - give love and support and try to understand and help him to the best of my ability. OK so Josh may need a little more understanding and help than the average child but he's so worth it and I've learnt so much from him that I would not have learnt if he wasn't Josh.

When Josh was 2 and a half he started going to pre-school. He'd been going a while when one of the teachers came back to work after being off on leave for a few months after loosing her baby. After a few weeks of being back she asked if she could have a word with me in the back room. My first thought was "Oh my goodness what has Josh done?!" She sat me down and explained to me that her son was autistic and although she was no expert she could see a lot of similarities between her son and things that Josh did. She said Josh didn't give eye contact and that when she'd watched him playing with the garage he walked over other children to get round the other side to get his car without seeming to notice that the other children were there. I think I was just so shocked that I just thanked her for telling me and did a runner with Josh back home. I then sat and cried for about 3 hours. I sobbed my heart out. I'd known for a long time in my heart there was something "wrong" with Josh but so many people had reassured me that boys were always slow to speak or that he seemed perfectly OK to them that I had started to hope they might be right and I was wrong.

What made it worse for me was that the only thing I knew about autism at that stage, was from a programme I had watched about a little autistic boy in Britain that used to bite his own hand and kick his mum. His parents had worked and saved and done fund raisers in order to get enough money together to send their child to a special school in America. When they eventually went back to see him after he had been there a quite a few months they were amazed because he hugged them for the first time ever. I'd just split up from Joshua's dad and was wondering how on Earth I was going to get enough money together to send my son to America and if I got it how would I be able to cope being parted from my son for that length of time. Every time I thought about the separation I would just sob my heart out all over again.

Eventually I pulled myself together and called Josh's old playgroup leader. I knew her from staying to help out at the playgroup when she was having problems with a member of staff just not turning up for work and giving to notice that she wasn't coming in. I knew Rachel had two boys who were both on the Autistic Spectrum and I asked her if she would come up and have a look at Josh and tell me why his new playgroup leader had come to this conclusion, as I must admit, I didn't really get it.

Rachel was brilliant, not only did she point out autistic traits as he was doing them but she also got me to write them all down to show the GP when we went. She explained that the Doctor should refer Josh to a pediatrician who would decide whether they thought Josh was fine or needed further assessment. I'm so glad I had that list because the Doctor wasn't convinced at all that Josh had any problems out of the ordinary. I kept telling her that these were things that someone had pointed out me and she had two sons on the autistic spectrum and if there was something I wanted to know sooner rather than later so I could get him the help he needed. I think because I was so insistent she agreed to refer Josh to a Paediatrician but she was keen to point out that she didn't think anything would come of it.

To cut a long story short, a few years later Josh was eventually diagnosed as being on the milder end of the autistic spectrum/borderline Aspergers. Fairly recently I decided to find out what the difference was between the two as I'm frequently asked what the difference is and I had to admit I didn't actually know. So after much research, and it's not that easy to find out, I now believe that the distinguishing feature that defines whether a child is "mildly autistic" or "Aspergers" is down to whether they have delayed speech as a baby or not. Because Josh had delayed speech he's mildly autistic. However if he'd not had speech delay but still had the traits he has then he would be diagnosed as Aspergers. I hope I've got that right!

Just after we moved to Cheshire Joshua started seeing a speech and language therapist called Rose. This woman will always be seen as an angel in my eyes. She gave me so much insight into my child and gave me so many ways in which I could make his life easier for him and I can never thank her enough for that.

On our first visit to Rose she asked me if I'd had it explained to me what having autism is like. I hadn't, so she explained it to me like this:

You know when you start a new job or you go for a job interview and you feel excited but nervous at the same time. You don't know who you are going to meet or whether they will be nice or nasty. You don't know what questions you are going to asked or what you are going to be asked to do. You know there are certain things they are going to be watching you for and you really don't want to mess up and you need to give a good impression so you are really making an effort to be the person they want you to be. For someone on the autistic spectrum that is how it feels every single day of your life.

That was the first real understanding I had of what Josh's world was like for him. I suddenly understood why he wanted to control as much of his environment as could. This is why Josh always had to press the button on the microwave and would become distraught if I forgot or thought it would be quicker to do it myself than try to distract him from the TV. Josh had to press the button on the washing machine. When we moved here he had to set the alarm when we out of the house. He had to go the same way to pre-school every morning and he had to have a sausage roll on the way back from pre-school every lunch time. It was his way of gaining control of some thing in his life and why he got so distraught when he "lost" that control by someone else pressing the button or setting the alarm or having to go a different way to pre-school.

The first thing Rose suggested was to give Josh a calender to go in his bedroom and to write everything on it. You can get things called PECS which are picture cards to represent different activities that children will do every day and a lot of severely autistic or non verbal autistics use these on a time line to let them know what is going to happen. As Josh was such a great reader we decided not to use these and just to write on his calender what he would be doing each day. At the end of every day we cross off today and talk about whet is on the calender for tomorrow and if there is anything out of the ordinary coming up like a holiday or sports day at school then we will talk about that too.

Once we put this into place Josh was like a different child. We'd only been doing the calender for a few months when Josh stopped needing to press the button on the microwave. If he was in the kitchen he'd be asked if he wanted to do it but if he was in another room and he heard the microwave "ping" as it finished he would be fine with it and would not burst into floods of tears and bang his head violently on the floor as he would have done before. Now, of course, the microwave and washing machine hold no appeal at all. He still has an interest in electronic things and likes to press the button to unlock the car but it's not something he "has" to do, it's just something he likes to do, and that's a huge difference.


CraftyC said...

Your story sounds so familiar to mine, Daniel aspbergers is only recently diagnosed but we get no help or support whatsoever, there are days when I loose it and other days I am totally calm, having an Aspberger child is not easy and I have 2 other children (both girls) who dont really understand and are luckily not affected. We must compare notes some day!!

Lee said...

Wow! What an amazing amount of information and sharing you've done!! So many don't know how to understand/ask for the help for early diagnosis......and YOU are giving moms that power!!! You are amazing!!!!

SammieJay said...

I read this and was once again gripped by your experience.
Best wishes,
SammieJay x

Shh-Shh said...

Hi fe ...again ... astounding insight... could I be a pest and ask that you print these insights off. I think it would be excellent for the some of the staff in my nursery to have a read. (and parents if need be!)

love Sharon.x.x.x
(miss u lots!)

ScrapMomOf2 said...

Fiona - I'm so engaged in this story. Your writing is amazing, and I think sharing Josh's story with us is wonderful.