Autism Awareness Day, what is autism our Reality

Today, 2nd April is World Autism Awareness Day and April is Autism Awareness month. This is something I was not aware of before I was a mum. Something I had probably heard and soon forgotten because it didn’t affect me.

I am sure there are many people that have not had a personal experience of autism. Only knowing of autism from what they have read or seen in the media or heard through friends.

There is nothing wrong with this in my opinion as we all have life experiences of different things. No one can expect to know everything about everything!

So here on World Autism Awareness Day, I thought it only right that I briefly share our experiences of autism as a family and my hopes for autism awareness. If you want to read more about autism this autism resource is great.

Autism diagnosis as a young boy

My amazing son Ben was diagnosed with autism when he was 2 years old. Ben was very severely autistic and he had regressed and lost skills prior to his diagnosis. He was late in developing any language and had very poor social skills and the diagnosis was very fitting with his behaviours, abilities and the boy he was as a 2-year-old. I won’t call him a toddler as at 2 he was far from toddling he was only just starting to walk.

Ben had amazing intervention from speech and language therapists, playworkers, paediatricians, physiotherapists and occupational therapists at a young age. That along with my input and the support of various charities and organisations has made Ben the boy he is today.

Ben went to a mainstream preschool and has then attended special schools since the age of 4. If you looked at Ben when he was 2 and given that diagnosis and the boy he was then you really wouldn’t have believed he could grow into the boy he is today.

Ben now

Now Ben is very verbal and can talk and talk. He does have the common autistic trait of not really understanding that you don’t have the same interests as him. As such he can talk for hours about things like Minecraft without a break!

Ben still very much needs a special needs school because he of course still has autism as it is a lifelong condition. He also has a number of other conditions or labels which affect him day-to-day too. Ben is a very academic young man and loves to learn, if you looked at his reading abilities for example it is very much that of any other child his age without autism.

That said, Ben still struggles with social skills and social understanding. He finds controlling his emotions and understanding his emotions very difficult. Ben also has difficulties in various other areas. He still clearly meets the diagnosis of autism but perhaps not so obvious to strangers as he once did.

Ben is a sensitive young man who is aware he has autism but does not really understand what that means completely. For this reason, I am not going to talk too in-depth about Ben because he often reads my blog. I feel he doesn’t completely have the understanding to consent or not.

What I will say though is that Ben wants to be able to do all the things any boy his age wants to do. As far as I am concerned as his mum I will never stop him from doing that. Of course, he may at times, however, need more help than other children to achieve this.

Things I would love you to know about autism

Ben at 2 years old and Ben now from the outside come across so very differently. They both however fit the diagnosis of autism. If you take away one thing from reading this I would love you to take away that all children with autism are different, all adults with autism are different, and all people are different.

The label does not dictate what the child/adult will look like, behave like, respond like, or what they will achieve in life.

Autism is a diagnosis based on a person presenting with difficulties in certain areas. The doctors and professionals who diagnose someone with autism have trained and will only give that diagnosis if they are sure.   Parents of children with special needs, in my opinion, and based on my experiences, want their children to be accepted and treated with the same respect as you would any other child.

I can not speak for how I will feel when Ben is an adult as that time has not come yet. However, I do know that he will be a young man with feelings. Whether a child or adult has autism or any other condition that makes them different in some way from what you perceive as normal, always try to remember that for them that is their normal.

Something to think about

Today I read something which really touched me on a few different levels. A friend of mine with a small baby was out shopping and an adult with obvious learning disabilities was chatting with the baby. The parent of this adult then said to my friend “thank you for letting her speak to your baby and for chatting with her”.

Obviously, it is great that people like my friend do not discriminate as maybe people would have in the past and ignore someone with obvious learning disabilities. However, it is also sad that this parent felt the need to thank my friend. To me, this shows that as a society there is still a long way we need to go.

If autism doesn’t affect you at this time in your life because you don’t know closely anyone with autism please remember that once I was like you! One day it may affect you.

I wish I had known more about autism before I had Ben and been more understanding than I imagine I was. I hope that over the years the awareness and acceptance of people with any differences continue to improve.

I am not asking you to go away and read lots but if you can do one thing that would be great. Please ensure you, and your children, do not unintentionally use words such as retard. They were once used to describe someone with mental retardation, and sometimes still are. Often however they are used out of context as an insult and this, in my opinion, is never ever right.

If you would like to read more about autism the National Autistic Society is a great place to start. Also, fellow blogger Glutarama shares a lot about her son with autism. Living with a child with special needs can be difficult but many bloggers to share their experiences to help you. Be has grown up so much and even runs his own blog. Another question I find myself asking is, should we test for autism in pregnancy.

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