GUEST POST: Autism

Salam Alaikum

In April 2007, I gave birth to a beautiful baby boy, MashaAllah. During the first year of his life I did notice a few things, such as he didn’t like cuddles as much as the girls, he would never fall asleep whilst feeding, rather stay awake throughout the feeds and only when I laid him down, he would sleep. As most parents do, I put it down to him just being different than my girls as he was my first boy. As he became older, I noticed there wasn’t really much development going on. At 6 months he still hadn’t turned from back to stomach and vice versa, that only happened when he was around 7 months old and he didn’t sit until he was around 10-11 months, but then he walked at 13 months. I did speak to the health professionals (health visitor, midwife and GP) about my concerns but they all put it down to him being a boy, Khair InshaAllah

As soon as he could move around he would play with anything that had wheels on. He could sit and spin them for hours and he particularly loved his trains and cars, which he would play with all the time, lining them up on the floor, on the heater etc and if anyone knocked them over he would completely break down.. This was also just put down to him being a boy and a part of growing up!

When he was around 2 years old, he started to get some odd things going.. Like he wouldn’t leave the house without a hat on, otherwise he would just scream and cry uncontrollably whilst holding his hands to his ears.  The outdoor temperature also had a big impact on him, he would simply lock his body up, as if he was a frozen statue, which meant I ended up carrying him to and from the car during school runs.

One day a dear friend of mine was around ours, whilst Ayoub got into one of his more unbearable tantrums, where there was no obvious reason for it and he wasn’t able to tell or show me what was wrong. She asked me straight out if I had considered getting him checked for autism, as she thought he had quite a few autistic tendancies. I was speechless and quite offended aswell.. I mean who is she, coming into my house and giving him such a label? I explain to her that there was nothing wrong with him, as both our GP and health visitor had said it was a part of growing up and being a boy..

When Ayoub started nursery, in April 2010, he had his elder sister with him (my second daughter was attending the nursery at that time). He did really well and thoroughly enjoyed it. But I think it was because he had been coming to that nursery since he was born and therefore knew all members of staff. Whenever he got upset, Dina would comfort him and the drama was soon over. But as we got closer to end of term, the head of the nursery, pulled me aside and we discussed some of the issues with Ayoub. She told me that he seemed too excited about the smallest things, at story telling he would him up and down and really get into the story. Aswell as he would remember the story almost word by word, just by hearing it once or twice and would interrupt the session. Lol this really made me laugh, because to me that just indicates he has great memory skills, although I know it must have been rather annoying for the teacher telling the story.. Also he had some issues with sharing toys and he would get completely thrown off if he didn’t get to play with the trains every morning. It was as if he would create his own routine. He would get in to the nursery, straight to the trains, then when the door opened, he’d go outside to play, then back inside for a snack , play with the trains and outside again, until it was tidy up time and they finished off the day with a song and a story.. After telling me all this, she then went on and say she though he might be slightly autistic. Not that he was, but if he was, then it was a mild version of it. Again I got annoyed and offended and explained to her, just as I did to my friend , that there was nothing wrong. And we left it at that.

Just as we finished that school term, the kids’ father became very ill. He was in hospital for several weeks and there was a period of time, where the doctors gave him 50/50 chance of survival. This had a huge impact on the kids. I could not get myself to tell them the reality of the situation, they were told he was very ill, but would be back soon, InshaAllah. It was probably the most differcult time for all of us and it was then I noticed how Ayoub would withdraw himself completely and he became very clingy aswell. He has always had difficulties in attaching himself to people and this got worse during this time. In the end I had to inform the nursery of what was going on, as he was becoming more and more frustrated at home. He would attack his sisters without reasons and it was a constant battle everytime he came home. The school were absolutely amazing! They offered me transport for the kids and offered them fulltime sessions, without extra costs. They even offered to take them out and babysit! But because I was on the go from when we woke up until bedtime (had to take care of their dad’s business and visit him daily), they were such a great support for both me and my kids, that I’ll never be able to thank them enough! As the summer holiday approached their dad started to recover, Alhamdulillah and was finally discharged. I knew that this would be a long holiday and right I was. Ayoub totally rejected his dad, he refused to even be in the same room as him and it took us weeks for him to get used to seeing his dad in this fragile state.

In September 2010, Dina joined her eldest sister in primary school, which meant Ayoub would be in nursery on his own. This was in particular hard for him to accept and he would absolutely kick off every morning, after Dina and Maria had been dropped off. And as we approached the nursery, he would refuse to get out of the car and sometimes he would try to hurt his baby sister aswell. But when we finally got out of the car he’d be fine. Then when I picked him up from nursery, he’d start all over again, screaming, throwing himself down on the road and God knows what! This would start as soon as we came out of the nursery until we came home. Then he would start attacking Jennah (his baby sister) and would do anything to make her upset. This in particular was very hard to deal with. She was defenceless and I would be locked into sitting with her in my lap constantly, so he wouldn’t touch her and this would carry on for at least an hour or so. Then it started all over again when we picked up the girls from school. He would attack them, but especially Dina. It got to a point where I actually starting thinking there must be something wrong with him. I spoke to the head teacher again and she said they’d keep an eye out for the different aspects which would indicate there was something wrong and by them collecting information, they’d be able to refer us to the childrens mental health unit (who will be able to get the right people in and a diagnosis).

As time went by, Ayoub started to settle in a bit more, as he got used to his routine, but he’d still be lashing out after Jennah whenever possible. During that academic year I spoke to the nursery several times and every time they would give me a different answer. He’d have autistic tendancies, then he’d be fine and then again autistic tendancies and this circle kept going until I actually asked them to help me to get hold of the people who deal with autism, so at least we’d get a professional in to look at him and get a diagnosis once and for all. All this run around made me more confused than anything, aswell as frustrated. They contacted camh, who told them to send me on a parenting course! Ehm hello?? What was that all about?? The head of the nursery also got offended by their suggestion, as she knew there was absolutely NOTHING wrong with my parenting skills and she actually hung up on them lol! She then told me to go to my GP, who would be able to get a referral through for me. So I did, but the outcome was nothing like I had expected. I told him about all my worries and what the nursery had told me, in hope he’d say I wasn’t going insane and there was something! But nope, he turned around saying if my son was autistic, then all his kids were autistic! SubhanAllah what an unprofessional and arrogant statement to make. He then went on to say I had to contact my health visitor with my concerns as he’d only deal with 5 year + children with mental health issues.. I was NOT impressed! But I did contact my health visitor who gave me a similar answer as previously, “he’s a boy, he develops slower then girls” bla bla bla.. Then she wanted the nursery to write a report on his behaviour, so she could take that into consideration and take it from there. I honestly felt they were kicking me whilst I was down. Wouldn’t a good GP or health visitor take a mother seriously if she has concerns?? I went back to the nursery, feeling totally defeated and explained what had happen.. They then turned around and said “oh well we’ve tried, there might not be anything wrong afterall” and no paperwork would be done.. Talking about feeling let down, I was devastated..

But Alhamdulillah for my good friends both in real life and online. Without them, I doubt I would have been able to fight back at them. As one dear friend said to me “you won’t get anything done in this country unless you hassle the system, keep going and you’ll get results!” and so I did. I went back to the nursery and demanded that they’d do something to help me out, especially since he’d start in primary school after the summer holiday, which I was dreading as he doesn’t handle changes very well. And Lo and Behold! They FINALLY got the ball rolling! They sent a referral through to a speech and language therapist which we’ve been seeing over the summer holidays. There was a bit of a mess with getting different therapists almost every session, but in the end we finally met the therapist who’ll be the one looking after him from now on. During these sessions, they’d fill out a questionnaire, which went into details in every aspect of his life. They’d try activities and so on. And Alhamdulillah they could see straight away that there was something that wasn’t right! Oh I can’t tell you what a relief it was to finally see someone who actually believed me and was able to see some of his behaviour on first hand. Although they can’t give a diagnosis, what they’ve discovered so far is that he has some sensory issues. He also has problems with understanding what is being said. He’ll only respond to a 3-4 word question. Anything more gets too hard for him. But his speech is great MashaAllah, he’s actually advanced in that area and will use words that older kids would use. So as you can see, his speech and understanding don’t add up. Also there are some delays in his motor skills, such as he can’t catch or kick a ball. He can’t run very well either but is improving in that area.

My little man started in reception over 3 weeks ago and as expected it has been an absolute nightmare. He has found it difficult to settle in and now his behaviour issues have really come up to the surface. He’s getting better, but it will take quite some time to get him properly settled in his new environment and routine. I had told his teacher about his situation before he started and they’ve already made a referral to a child psychologist, Alhamdulillah so now it’s all a waiting game. He gets his speech therapy assessments at the school and has been booked in up til half term.

So that’s my experience with autism. When it first was brought to my attention, I was both ignorant and in denial I guess. I knew hardly anything about autism, or what I knew was only the severe autism. I had no idea there were different forms of it and if you read about it you’ll soon see it’s much wider than initially thought. It has affected our family in many ways, especially his dad, as he has totally rejected the idea of autism up until now. Which has made things even harder, because if you don’t get support from him (who is a vital person in my son’s life) how can he ever learn to understand his own son? But Alhamdulillah he’s slowly accepting it now. There is a long bumpy road ahead of it, but InshaAllah we’ll get to the end of the road, stronger than ever.

So what is autism? Well basically it’s a development disorder which affects how people on the spectrum communicates and relates to others, aswell as how the world make sense to them. It’s a lifelong disorder, as there’s no cure for it, but if getting the right help, they can grow up and live quite an independent life, depending on the severity of the disorder obviously.

If you would like to read more on this disorder, please visit this site as it gives a more detailed explanation on this disorder and others that are similar

http://www.autism.org.uk/