Today is World Autism Awareness Day, and the month of April is Autism Awareness Month.
Roughly 1 in 100 children are diagnosed with an Autism Spectrum Disorder and 1 of them is my 3 year old. He was diagnosed 6 months ago, but I had felt before he was 1 year old that he had some kind of special needs because he always had physical delays. Around 18 months I started to wonder about Autism and it took more than a year from then until he was diagnosed.
Autism is a lifelong developmental disability that affects how a person communicates with and relates to other people, and makes sense of the world around them.
It is a spectrum disorder, meaning there is a massive variety in people with Autism. There is a saying that if you have met one child with autism – then you have met one child with autism. You can’t make generalizations.
People used to say to me “he can’t be autistic, he can make eye contact” “he can’t be autistic he is so affectionate” “he can’t be, he is very social” – but children with autism sometimes can do these things. In fact my little boy is overly affectionate, he does not have the normal social boundaries or inhibitions or any awareness of strangers, or any danger awareness. He would happily go with anyone. This is part of his autism, but it does not fit the stereo type some people have of children that will not look at or touch anybody and are very isolated.
People with Autism can often be either over or under sensitive to noise, lights, touch or other sensory issues which can make every day situations very difficult. My little boy tends to be quite sensory seeking and has a fascination with water, we are always having to stop him from trying to pour water all over the house, and have to be careful as he could flood the house if our back is turned. Obviously we do try to direct him to more appropriate water play and give him an outlet for it where possible!
Getting him to wear new coat or shoes is very difficult for him and he gets really distressed. Having his hair cut, which is a simple thing for many children is a massive achievement for him. He recently managed to do this, although with a lot of support and reassurance, but it was such a proud moment for us! The small things which are not a big deal to majority of children, can be real issues for children on the austistic spectrum.
In the shoe shop for example when a child is having a melt down as they can not cope with having their feet measured, or can not tolerate the feel of the new shoes, and are unable to understand the situation and the need for new shoes, and have become overwhelmed by the situation – to a casual observer they may start thinking how naughty the child is! But this is not the case, and we should not rush to judge. Of course children with autism can be naughty sometimes too, and we must guide them and support them and help them to cope, but it can be harder and what is needed is understanding and patience.
The amount of ignorant comments that families living with Autism come across on a daily basis can be quite disheartening.
This varies from people telling you that your child’s condition must have been caused by you giving the wrong food to them, must have been caused by giving vaccines to them, must be caused by cousin marriage, or caused by whatever else random thing people can think up!
Then you get those who try to be reassuring, by telling you “there’s nothing wrong with him” “he will grow out of it” “I’m sure its normal for them to do that” “so & so’s child didn’t talk til 5 yrs old then they just magically started talking”. It’s true that there is nothing wrong with my boy, he is perfect as he is, and this is who he is BUT he does have ASD and he will always have it. Having to deal with friends or relatives who refuse to accept a child’s condition is not helpful.
Then you also get the busy bodies who want to tell you what to do or just have their say. For example strangers, on seeing the children in the buggy come up and say “make them walk!” and I have also heard so many parents saying its sickening to see older preschoolers or children in a buggy, it can only be down to laziness of the parents – etc etc. My little boy is in the buggy the vast vast majority of the time, this is for his own safety as he has no danger awareness and coupled with a fascination with cars, that is not always the best combination! We do work with him on walking outside the buggy, in order to strengthen his muscles which is important for him too, but this is not safe for him to do all the time!
Then those who presume that if your child can not speak, then you must not talk to them, and of course their little darling has such a wide vocabulary because they are always talking and they read to them morning, noon and night. “Have you tried reading to him, and singing songs?” some people ask, as though it would not have occurred to us to do so, and as though it would make them talk over night!
My little boy is lovely, he is a joy to be around and he wins everyone’s heart – whoever meets him loves him! His name means perfect and complete, and he is.
I wish the world will become more accepting of differences, and I wish things were easier for him than they are.
Hopefully by raising awareness of Autism slowly we can change attitudes and help to make the future a little easier for my boy and others like him. So if you come across someone who does not know what Autism is, or has some misconceptions please do what you can to dispel them as every little helps!
Finally, I thought I would share this video which we watched in the Early bird course (a course for parents which children recently diagnosed with ASD). It is only 10 minutes and explains the experience of living and growing up with Autism, narrated by people with Autism themselves. It’s worth a watch if you have the time.