Autism Awareness Day – 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 of you readers that have not had a personal experience of autism and only know of autism from what you 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 and 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.

My amazing son Ben who is now 11 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, was late in developing any language, 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 wont 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, play workers, paediatricians, physiotherapists and occupational therapists at a young age and 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 pre-school 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 aged 10 Months had just learnt to sit unaided
Aged 11 Ben is very verbal and can talk and talk, though he does have the common autistic trait of not really understanding that you don’t have the same interests as him and 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. Ben 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. Ben still struggles with social skills and social understanding, he finds controlling his emotions and understanding his emotions very difficult and he has difficulties in various other areas. He still clearly meets the diagnosis of autism but perhaps not so obviously 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 and also I feel he doesn’t completely have the understanding to consent or not to me sharing some aspects. What I will say though is that Ben wants to be able to do all the things any 11 year old boy wants to do and 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.

Ben aged 11.
Ben at 2 years old and Ben now at 11 years old both 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, 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, only want for 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 to what you perceive as normal, always try to remember that for them that is their normal.

See how much he has changed!!

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 to the baby. The parent of this adult then said to my friend “thank you for letting her speak to your baby and for chatting to her”. Obviously whilst 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 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 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 different, not just with autism but other conditions too, continues to improve. I am not asking you to go away and read lots but if you can do one thing then please ensure you, and your children, do not unintentionally use words such as retard which whilst they were once used to describe someone with mental retardation, and sometimes still are, they are often 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 or alternatively if you would rather read more personal stories below are some bloggers who talk a lot about autism and are happy for me to share their links with you.

Sophie from mamamei.co.uk shares a video about her brother here

Danielle from Someone’s mum shares her experiences with her son who has autism here

Alice blogs about her son over at Living With a Jude here

Becci blogs at To Aufinity and Beyond and her son Sonny here

Ann talks about raising her children with autism and other disabilities here

Vikki blogs about her boys and their autism a lot over at mum times two here

Becka over at Mummy Est 2014 talks about the assessment process and her experiences, as an early years professional with a child with special needs Becka is very open about their journey.

Louise at Weeohana talks about sensory play, how her sons autism affects him and the family and various other similar topics.

Kelly blogs about their families adventures with autism over at Its a tink thing

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