Bonnie talks about her struggle as a parent to help her son, Lewis, fit in, as he does not look ‘autistic enough’.
Autism was not a word that I had expected to hear when we had our first speech therapy visit four years ago, but it was a real eye-opener and the doorway of putting the missing puzzle pieces together. My son Lewis, who is almost seven years old now, is a very bright and good-hearted child, who was diagnosed with Autism when he was just three years old. Like many parents, having that piece of paper with an explanation put our minds to rest. Lewis does not have a lot of the stereotypical traits of autism, which means strangers often say that he ‘does not look autistic’. Lewis was always a terrible sleeper and only started sleeping through the night when he was five years old. He still wakes up around five o’clock daily! He attends a special needs school and has disordered speech, but he is trying to make progress.
Judgement from others
The judgement my son has faced has been difficult for me to endure as a parent. Lewis has now gotten to the age where he realizes when he is being judged and asks questions. In the past years, it has been difficult because of the way people judged his speech and behaviour, blaming it on bad parenting or simply on his being a naughty child. We have also been passed over for many playdates, and I have even had a parent who worked with autistic children that she does not believe he is autistic. People didn’t like inviting us to their home, because Lewis would be rough when he played or make strange sounds. Other parents would also find him too stressful because their own child was picking up on the same behaviours. Playdates were stopped after that and no more contact was made again.
I took Lewis out to town on spring mornings when he was still in a buggy. He would have meltdowns and scream a lot, which led to a lot of stares and complaints. On one of our morning trips to town when Lewis was a little calmer, a disabled woman came up to me and said: “Is he being good today?” I felt surprised and embarrassed at her remark and I told her he is autistic, but she just walked away and I knew that she didn’t believe me. Attending general play groups was also unsuccessful, as Lewis did not play calmly like the other children. One of the employees of a play group told us to leave because he was too vigorous for all the other children.
After these negative experiences, I found some online support from professionals who told me to attend special needs groups. Here, I thought I could finally meet some like-minded people. However, the other parents seemed cold and stand-offish. We were left in a room while the door was still open with some toys while the other parents all sat in another room together, looking at us like we did not belong there. Here, the parents suggested that Lewis was too ‘normal’ for a special needs playgroup!
We have even had family members who stopped talking to us, either because they find out that Lewis has autism, or when they refuse to believe that he has a disorder. I also find people are always interested in telling me their problems but anything about Lewis that we have gone through they don’t want to know or stop talking to us and we never understand why.
Support and growing up
When a support worker suggested to put his name down for special needs nursery we didn’t really think he would get in. To our surprise he did and he absolutely loved it there. He has now started at a special needs school and he also loves it there and the teacher tells me that he always gives his education his best. I think it is sad how judgement can come from many angles but I feel proud as a parent that I have taught Lewis to be strong and most importantly how to be kind. My husband and I have both dealt with something we never thought would happen to us, we have both worked hard, found support online and were lucky to be guided to the correct people who have helped Lewis to get to where he is today. We even received some advice from a famous person, who told us that autistic children need supportive environments to thrive – I think he is so right!
This article previously appeared in SEN109. For more articles on parenting, click here.