I want to start this in the most positive way possible as one of the saddest parts of the diagnosis process is the focus on all the negative aspects of your child’s condition.

David is the most wonderful seven year old. He is kind and loving and great fun to be around. He has the most amazing memory and is always able to help me remember phone numbers and bus times. He knows a lot about maps and travel, the world of Harry Potter, Trains and many, many other things. He has a thirst for knowledge and loves to share it with others. He is very talented with computers and often helps both me and his teacher out in this department. David also has Asbergers syndrome combined with Tourrettes. There is no cure for either of these conditions, it will be a life long struggle for David and the rest of us in his family, to help him to manage the negative aspects in order to lead a happy and healthy life.

Before I start to look at the negative aspects of Asbergers I would first like to say that I would not change David. We all view Asbergers as a gift and in many ways David is advantaged over us lesser mortals. Wouldn’t it be great to have such amazing memory skills? Just think how handy that would be when it came to exam time!

David was a very health 7lb 14oz baby. He was born on time with no major complications. As David was my third baby I noticed differences with him right from the start. He was a very good baby, too good to be true in fact and from talking to other parents this seems to be a common factor. David never cried. If he needed attention he would make a low moaning sound, this meant that we had to be extra vigil as it was not always loud enough to get your attention especially during the night. Due to a shortage of Health Visitors in my area I was visited by a Midwife, and these visits were few and far between. Any time that we raised any concerns about David, we were told not to be silly, that we didn’t know how lucky we were to have such a happy, easy baby. Shortly after this I was diagnosed as suffering from severe post natal depression and the main concern of the health professionals was directed at me.

As David got older, his condition became more apparent. He developed a lot slower than my other two kids, sat up around nine months and was very slow to move. There was no separation anxiety and he was very happy to be left on his own for long periods of time (most of the time you felt like he wouldn’t notice if you were not there). He was a very fussy eater and for a period of time would not eat anything other than bananas and baby rice. He developed an obsession with opening and shutting doors and drawers and if you tried to stop him from doing this he would through an almighty tantrum. He would become very distressed if their was a lot of noise, he hated the sound of the hoover and would scream if he was around it, he also hated going shopping in the supermarket because of all the sounds that are there.

When David was just about three, I contacted my Health Visitor again. David was due to start nursery in a few weeks and he was still not toilet trained, and was showing no signs of getting close. His temper tantrums were really getting me down and making it very difficult to take him out. His behaviour was also having an effect on my other two kids and they were struggling to cope with the lack of time that they were receiving from me and my husband.

If I was to say that this woman was unhelpful it would be the understatement of the year! Not only was dismissive of our concerns she was very judgemental. As far as she was concerned David’s problems were all a result of my postnatal depression and inconsistent parenting. Her only suggestion was a star chart in order to help him with his toileting. Not surprisingly this had a very limited success. We were lucky that the staff at David’s nursery were so supportive and allowed him to attend provided he was wearing nappy pants. They were very tolerant of his quirks and he really enjoyed his time there, taking part in most of the activities that were offered but still refusing to dress up and not being able to cope with being called any name other than David. This was problematic if one of the kids suggested that he should be Spiderman and could result in a full-scale temper tantrum, but by this time we felt that there was no point in talking to anybody about David as we felt we were banging our heads against the wall.

Although David’s issues continued to be a real problem at home, we all adjusted to fit in around him and continued to soldier on unaided. He progressed well through nursery and into Primary 1. I raised concerns with his teacher but she felt that he was doing ok at school all though he was finding it hard to fit in, he was also quite immature compared to his peers. At this time he was still struggling with toileting and was unable to dress himself. He needed help with bathing and was becoming very fussy about the way that his food was presented. Everything had to be separated on the plate and he would not eat any kind of sauce. He played alongside the other children rather than with them and would often accuse them of cheating. Needless to say he did not have many friends and was usually seen running around the playground alone.

It was only when David went into Primary 2 that his needs became really obvious. With the emphasis becoming more about work and less about play David was struggling keep up. His teacher was becoming increasingly frustrated with him as he would not settle down and stay on task. He was able to read by this time and picked up the basics of writing and number work very quickly, but was unable to show this, as he would refuse to write anything down. Most days he failed to complete any of his tasks and these were being sent home, but even with one to one attention he would not settle to his work. It was around this time that he first started refusing to go to school and would not get up in the morning. He was wetting the bed and having nightmares and would not settle to sleep at night. This is an ongoing issue and is the one aspect of David that I struggle to cope with. It means that I get no time in the evening to recharge my batteries and mornings are a nightmare for me. I very often lie in bed and just dread getting up.

In agreement with the school I took David to my GP as I was fed up with Health Visitors and school nurses. While we were in the waiting room David went into what I can only describe as full scale Asbergers mode. He was shouting at the other kids for not behaving and was not coping with the noises and smells, and was in the process of banging his head off the floor when the doctor came to get us. While this was really distressing for me I couldn’t have hoped for better. After a few quick questions David was referred to the consultant paediatrician for assessment.

While we were waiting for this appointment the school were great. Lots of support was put in place for David, a classroom assistant would help him with his work and he soon caught up and overtook the other kids in his class. The playground ladies were great at keeping an eye on him when he was outside and he settled back in to school to an extent although he still hates it.

David is now in Primary 4 and is doing well academically although both myself, and his teacher feel that he is not reaching his potential. He often uses a laptop for his written work and this helps him to communicate the wonders inside his head. He still struggles with working in a group and has his own table within the classroom as he easily distracted by the other children. He has violent outbursts, which, while they usually happen home have become more frequent at school, and have caused problems with his already strained relationship with the other members of his class. He has a time out card that he can use when he gets stressed and this allows him to leave the classroom before he has a blowout. So far this seems to be working well. His official diagnosis came through in February this year and was a huge relief to all concerned. This means that the school can now access support for him taking some of the strain off is teacher, although we have discussed the possibility of me going in and working with David in the gaps.

At the moment we really just take one day at a time. We are still waiting for appointments with occupational therapy to help with his motor skills and special awareness issues and also the clinical psychiatrist for help with his temper tantrums and other behavioural problems. Wherever possible I have taken over as his carer and learned about OT and do as much as I can to help him during the long wait. We also do work on facial expressions and common speech terms in order to try to help him with day-to-day interactions, this helps but it will always be a strain for him and it is no surprise that he is so stressed when he comes home from school. If anybody reading this is in a similar situation I highly recommend a giant trampoline. Not only does this allow them to let off steam it also helps with motor skills and is a good way to get them interacting with any visiting children.

I hope to keep updating this as time goes by. One of the most frustrating things for me as a parent has been a general lack of information about Asbergers teenagers and young adults, so I hope to allow others to benefit from our experiences in this department.

The only real advice that I would give to others in a similar place is to keep believing in your instincts. Nobody knows your child better than you. Do not be fobbed off and take all the help that you can get. Contact your child’s head teacher, the school can be a fantastic support to both your child and you. And most of all celebrate and love your child for who they are. Asbergers brings as many gifts as difficulties and these can be overcome.