Autism made me into a different person
Written on 11th Nov 2013 by Sylvia Lowery
I remember the moment when it hit me. My beautiful child had autism. This wasn’t going away. The future seemed black. All the usual dreams parents have of their child growing up, getting a job, maybe getting married, having children. They all went in a moment; one puff and they were gone.
Suddenly my world had been turned upside down. There is only one way to describe my feelings. They were feelings of grief. I went through the process of blaming myself. Had I played with my son enough? Maybe it was because he was three weeks overdue? Perhaps it was the measles vaccination?
As I lived through this process, allowing myself to grieve for something I had lost. Yet somehow I hadn’t lost anything, my lovely son was still here. He hadn’t died. This cause me to feel guilt because I had nothing to grieve over yet this intense pain just wouldn’t go away. It was as though I had lost my future, it just became a black hole.
I got through that time with God’s help my loss was replaced with a fierce love for my son. It was replaced with a strong desire to get him better. I scoured the Internet. The Sonrise programme claimed it could recover a child from autism. I began to lie on the floor and imitate Alex’s movements; I desperately wanted to enter into his world so that he could enter mine. So I could rescue him from his horribly painful terrifying world. He would scream and scratch himself. If I tried to get near to comfort him he would hit me and his intense distress seemed to increase. Alex describes how the world felt to him here.
I prayed and cried and worked. Yet through all this activity, I was learning valuable lessons. I learnt to live in the moment, to be thankful for the calm moments, the little steps of encouragement. I found the future too distressing and the past was best forgotten. I learnt to dump the bad things as soon as they were over. I remember being struck by how parents take the miracle of ‘normal’ development for granted. The moment this hit me most was when a friend told her two boys off for playing ‘peepo’ behind an electric radio. I was struck by the thought that I would give anything for Alex to play this game and she was telling her children off for it.
A friend suggested just talking to him about objects, I began with a large red plastic teapot. I would get up at five and start work before the rest of the family were awake.
Alex went to a special school for children with autism. I had just had Esther our fourth child. It was such a help to have a break. The school also worked on some of Alex’s Anxiety’s. They managed to cut his nails and his hair. I will forever be eternally grateful to his first teacher. She was so experienced and kind. I was exhausted from nearly five years of very little sleep and no respite.
Soon Alex began ABA therapy, he started to make improvements. But I discovered that each improvement revealed hitherto unknown difficulties. Language was there but he didn’t know how to use it in social situations. I remember thinking it’s not the failure, it’s the hope that breaks me emotionally. Alex shares some of his feelings of ABA therapy here.
Alex shows his love of beauty in the photographs he takes. Alex began taking photos to help him cope with anxiety when he’s out.
I don’t know when it happened but at some point I came to accept autism. I came to realise that autism was part of my son. It wasn’t the enemy that had taken over my son. If I hated autism I hated my son. That was wrong, I learnt to love autism. I realised that it is a good thing to teach skills but it would be wrong to try to get rid of the autism. ABA helped with teaching skills but it’s only a tool. I did disagree with the consultant who wanted to stop Alex from ‘stimming’ all the time. I knew Alex needed this and to stop it would be harmful. We changed consultant. This is something I will always be thankful for. If Alex had been stopped from ‘stimming’ he might be one of those adults who have grown up and been damaged by ABA.
Alex saw the world in such a beautiful way. Often while I was hurrying somewhere Alex would stop me and point out how amazing something was. He became that small voice that reminded me to appreciate the simple thing in life. Alex has always loved beautiful views.
As time went on and Alex was moving towards adulthood it became clear that he had a gift for public speaking. It was wonderful to know that Alex had been through so much and yet was able share his experiences of autism.
I don’t know when it happened but at some point I came to accept autism. I came to love my son for who he is. I learnt to laugh with him as we discussed his quirkiness. Then something amazing happened. He began to speak about autism. He was witty and insightful. I was amazed; suddenly I could see this autism as a gift.
Others could be helped through my wonderful son. I hadn’t found a cure, but I didn’t want one. Autism was a part of my son; it was what made him who he was. His brain was wired differently, he learnt in his own unique way. His autism enabled him to work in an exceptional way. He learnt his speeches. He used his photographs to portray what autism meant to him. But most amazingly he would plan a short film on a topic and the whole idea, how to film it what to say and do would be in his head before he started filming.
Alex has these gifts, yet everyday life has its struggles. He once said, “I have to be so determined to work hard to improve because I have autism.” It is such a privilege to see Alex’s attitude towards life. I am humbled as I think of my own petty complaints. Yet for some reason God has given me the honour of bringing up someone who has fought against the odds and who never complains. Alex is honest and has been filled with a desire to help others, to use his ‘disability’ to raise awareness of autism. This desire gives his life a meaning and in a very real way it has given my life a meaning too. I am a different person because God chose to trust me with a child with autism.
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the more people listen to Alex speak the more people are becoming aware of what it is like to have autism. The people that spoke to him today at the speech he did at theatre Clwyd were impressed with his speech. Alex dose have a gift and is keen to share it with others. He has grown into a fantastic young man. Like you Sylvia I am proud of him.