Elaine Carey talks about autism and bringing up two boys who lie on the Autistic Spectrum which include Asperger’s syndrome and ADHD.
Diagnosing autism for my boys
I have three children, two boys and one girl. The two boys lie on the autistic spectrum, which consists of autism, Asperger’s Syndrome, high functioning autism, ADHD (Attention Deficit Hyperactive Disorder), ADD (Attention Deficit Disorder), dyspraxia, dyslexia, ODD (Oppositional Disobedience Disorder) and more. My youngest is four years old and he has Asperger Syndrome. My eldest is 10 years old and he has recently been partly diagnosed with ADHD and learning difficulties with literacy skills.
With our youngest we first though something was wrong around his two-year check. The health visitor referred us to a paediatrician specialising in autistic spectrum disorders and a speech therapist, as his speech was a little delayed. The paediatrician did several tests and asked me I had any thoughts as to what was wrong. I’d studied a special needs as part
of a nursing course at college and told him it sounded like autism. He agreed and said that our son did show tendencies of Asperger’s, and did in fact lie on the autistic spectrum. We don’t have an official diagnosis of Asperger’s Syndrome as they don’t like to give ‘labels’ until they are older, about eight years I think. The reason for this is that things could change, but very few do and since this initial meeting some things have become worse.
With our eldest I thought something was wrong with him when he was about two-and-a-half years old. I mentioned it to the health visitor, who originally said ‘I have seen worse’. Seven years on, not much has progressed but we now have problems which may never be rectified as too much damage has been done. He had an assessment a couple of weeks ago, at my request, conducted at his school. This involved my son and me talking about his symptoms. The paediatrician did a few tests on my son, which involved writing skills, maths, reading, drawing and a co-ordination test to create a picture to better understand him. The paediatrician had another chat with me afterwards on my own and agreed that there was a clear indication of ADHD. This was confirmed in a report we received a week ago, which
stated there is a 99 per cent chance that he does have ADHD.
My younger son
There were various things that made us suspect our sons had a problem. My younger son never reached out to me, his father or other members of the family. He didn’t crawl but bottom-shuffled at around 12 months. He didn’t walk until he was 18 months. When playing, (which was unusual in itself) it was usually done in silence, which my mother picked up on.
His usual play involved just lining objects up, which is all well and good with cars but he also lined up soft toys, videos, CDs, saucepans etc. If, however, it didn’t go the way he wanted them to he would (and still does) crash them all and become very angry. My mother also picked up on the fact that if you pointed to something, eg the television, he would just look at your finger as he is unable to see the imaginary line that most of us draw.
My younger son has very sensitive hearing with an assortment of sounds, eg lawn mowers, kettles, food processors, lorries, fireworks, sirens, music, cheering, toilet flushes, hairdryers, hand dryers, to name but a few. If we are out, as a family, and he hears such a noise, he covers his ears, becomes extremely terrified and shakes with fear. He closes his eyes and asked to be picked up and moved away from the source. This can be very difficult as it quite often spoils activities we do together.
He is also sensitive to taste, smell and touch. He will often smell things that no one else can really confirm. He likes to touch new things and with new foods he will stroke them over his lips before he attempts to eat them.
If he has hurt himself, he will not let me look but will rub the affected area on my trousers, jumper or a cushion. His other symptoms include very late toilet training, which still isn’t brilliant, and he always wears a nappy at night. He can be very aggressive and hits out at me a great deal. He also started swearing a lot, words which his father and I do not use and never have used in front of him. He takes things very literally; for example if you told him to pull his socks he will do exactly that!
My eldest son
My eldest son suffers from the following symptoms: a fear of dogs, mood swings, aggressiveness, hyperactivity, short attention span, listening difficulties, short-term memory. He is disorganised, impulsive, easily frustrated and talks excessively. He lashes out at me and my husband and can’t sometimes differentiate between reality and imaginary. Some of these symptoms can be very upsetting, such as the mood swings, where he has
actually threatened to harm himself and others around him.
As he is easily distracted, has a short attention span and finds it hard to concentrate at school, his school work is falling behind. When we’re out he cannot walk anywhere properly as he insists on climbing on everything. He has a big fear of dogs so, if he sees one, we have to take a different route or cross the road and be very quiet. This, in turn, upsets my younger
son as he has routines and does not like change. The route to school can become quite a hectic adventure.
My son has certain obsessions, including outer space, which he is very clued up on. He can name all the planets in order and tell you how many moons each planet has. I have no interest in this but he will go on and on and on at me about it. His sense of humour exceeds those in his year and is more on a par with adults, who he appears to get on with better,
and some take to him very well.
People stare at us
My sons’ illnesses have had a big impact on our lives and our extended families. We have to take every day as it comes and find it hard to plan things as we never know what sort of mood the two boys will be in on a given day. The youngest boy misses out on quite a few things mainly because of his over-sensitivity to noises and large crowds. He is unable to go
to firework displays, carnivals, discos, parties and funfairs/adventure parks. He cannot cope with these sorts of places but it doesn’t seem fair to make the older boy miss out.
When out we do go out, quite a few people stare at us for one reason or another, either because my younger son covers his ears and becomes distressed easily or because my eldest son is behaving like a three-year-old.
We have had to make a few changes to our life, but so far nothing too drastic. However, I am not really on speaking terms with my family as they do not believe anything is wrong with my younger son and think we have just spoilt him. We have not told my family about out oldest boy’s problems as he does not want them to know for fear of them teasing him about it.
Telling the boys about their conditions
Our youngest son is too young to understand that he has anything wrong with him. Whether he will begin to feel differently as he gets older is a different matter. I hope that, when that time comes, he will be able to come to us with any questions he may have. Of course we will do the very best we can to help him in his quest to find out more about his condition and why he feels different to those around him.
As our eldest boy has only been recently diagnosed, I don’t think he has really taken it in yet. He is aware that something was different because, before we actually went to see someone about it, I did read an article about someone with ADHD to him, and he said it sounded like him. We talked to him about the difficulties he was having and that I was going to do something about it, mainly because of his fear of dogs. I told him that I was having a meeting at his school but didn’t realise beforehand that he would have to be present. When he came into the room he was a bit shocked but I explained the situation and told him that, no matter what I said about him during the meeting, I still loved him and that this was all for his benefit. When we received the report we sat him down and talked about the meeting again and told him what the doctor’s findings were. He responded in the way I expected him to, not good, and sort of in denial, but I keep talking him to him about it. I tell him why it is best to know as he may be able to get help at school and he will understand why some of his peers look at him oddly at times.
My tips for other parents
You, as parents, know your children better that anybody else, so if you think something may be wrong then speak to your GP or health visitor as soon as possible. If, at the end of the day, everything is fine then you haven’t lost out on anything.
However, if you still feel there really is something wrong keep fighting and shouting until someone actually does listen to you and acts upon it. At the end of the day, you want the best for your children no matter what. I have fought tooth and nail and, although at the end of the day, both my boys have difficulties and impairments, I wouldn’t have it any other way. I know that doing something about it about getting a diagnosis will help my children throughout their school life.
If you are going for an assessment, because you feel something may be wrong, go prepared. Write down a list of everything you feel is wrong with your child, a little diary of the last couple of weeks in the run-up to the appointment, and as much information as you can gather.
It will be hard when you look back at it all, and you may feel very upset, but just remember this is for your children. If you are anything like me you will do anything for them to help them get through this life as easily and as smoothly as you can.
- For more information on and support with autism, visit the National Autistic Society at http://www.nas.org.uk