A life with autism doesn’t mean a life without opportunities. In our latest guest post, a member of Newport Parent Network shares their story and offers advice on autism and positive parenting.
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My son is currently 18 years old. Ten years ago he was diagnosed with a form of autism called Asperger’s syndrome. This means he is high-functioning in some areas but not in others. He really struggles in social situations which are outside of his control.
When he was young he didn’t play with other children easily. He often flitted between groups or spent time on his own in the playground. His mother always felt there was something different but she didn’t know what. He was a good child and played quietly by himself but little things nagged at her.
When he started school there were lots of remarks about him being immature for his age. He would often cry and get upset when things went wrong. He also liked things that were seen as ‘too young’ for his age, such as Thomas The Tank Engine.
His mum felt that his teachers judged her as being too soft and mollycoddling him and, because of this, all requests to suggest other issues were ignored. When he was in Year 2, however, one of the teachers spoke to us about concerns she had. She had begun making observations about him because she had a relative with autism and he displayed very similar characteristics to our son.
We asked for a referral to get him assessed but were passed to our GP, who then passed us back to school. Eventually, we managed to speak to a school nurse who referred us to the Primary Mental Health Team and our journey to diagnosis began. I won’t bore you with the details of the assessment but about a year later our son was diagnosed with Asperger’s syndrome.
What do you do with a diagnosis?
The diagnosis was, at first, a relief. We felt we had been listened to at last and had an answer to our concerns! Then, through a need to understand the condition, we began researching.
The internet was full of stories about people with autism. A lot of these sites talked about negative experiences and painted a picture that filled us with worry that our son would have very little opportunities as he grew to become an adult. We felt, quite strongly, that he would need to live with us forever and would never be able to cope on his own.
This made us worry more because he was very academic. Education was important to him and he already had aspirations to go to university to study maths or robotics. His end goal was to be able to develop the skills to build his own robot so he could compete in Robot Wars!
‘Autism means no future’
But how would he do this? We talked through the possible scenarios. We thought that he could go to university in our hometown. Problem solved! But what if they don’t do the course he wants to do? What if he doesn’t quite get the grades and needs to go through clearing? What if the best university was far away? So many variables and no way to come up with a solution that accounts for all of them. That’s when we devised a cunning plan which worked on all levels. It was decided – we knew what to do.
The not-so-perfect plan
The plan was this: My wife would move to whichever town or city our son was to study in and live there until he completed his studies. This could mean up to 5 years. I would remain in our family home with the other children. We didn’t really give any concern to what effect this would have on the other children. Or that I would inevitably be unable to maintain a full-time job with three other kids and therefore be unable to continue to pay the mortgage. All we could think about was how best we could support our son to reach his full potential.
We continued with this plan for a few years until, one day, we had the opportunity to attend an event. At this event, a young man with autism was going to speak about his life. This speech would change our perspective on life as we currently knew it.
We saw the light
He started by talking about how difficult his teenage years were. He had real struggles in school and at home, and his mental health often suffered as a result. We recoiled at the familiarity and found ourselves crying at this realisation.
Then he moved onto his adult life. He talked about getting a job as a journalist, moving into his own flat, finding new challenges to overcome. Suddenly we saw a light. We had the realisation that we had been looking at our son and his condition in the wrong way. Before then it felt like his autism was a problem that was too difficult to overcome. But now we saw it differently.
Our son has autism. He will always have autism. He has always had autism. And he will struggle with certain aspects of his life. But, with the right support, he can live an independent life.
Our new future
From that moment on we began to plan what we needed to do to support him. We encouraged him to join groups and helped to develop interests that would develop his social skills. As a result he asked to do Duke of Edinburgh. After a lot of debate as to whether he would cope, we supported him to do his Bronze Award.
He went on other residential camps, some with Youth Club but also with the Rotary Club where he had been referred by school to do a Young Leadership Course. He enrolled on his Gold Duke of Edinburgh Award and as part of this he had to canoe along the lochs in Scotland! On the first night he rang home crying wanting us to come and get him, but after talking to him and calming him down, he completed the week and passed his Gold Award.
We decided to see the difficulties he had as challenges rather than barriers and, by looking at them in this way, he was able to overcome them.
Onwards & Upwards
Our son started university in September 2016. He is enrolled on a Maths and Computers Course where he will study for 4 years with an additional year in industry. For the last year he has been managing a budget that we have set for him and has been shopping for and cooking his own meals (which can be very similar but he has tried new things like toad in the hole with success).
He is living in Halls of Residence where he needs to continue to manage a budget and further develop his independent living skills. Luckily he is at a university which is still relatively close, so that any difficulties can be supported quickly dealt with easily.
Never lose hope
I guess that the message I am hoping to convey through this article is ‘Never Lose Hope’. Not every child with autism will go to university, some will always need a great deal of support, but there is always hope that they will be able to reach their full potential. If you want further inspiration I urge you to read up on Temple Grandin, Wenn Lawson, Ros Blackburn and Dean Beadle – just to name a few inspirational people.
Most of all, plan for your child’s future with hope in your heart.
We hope this guest blog has given you insight into raising a child with autism. If you have any suggestions to add then use the comments section below.
Like this article? Check out some others:
- Q&A: Raising A Child With Autism
- A Problem Shared: MMR & Autism?
- Guest Blog: “Why’s Matty doing that?”
- A Problem Shared: Autism & Anxious Behaviour
- Guest Post: ADHD Can Be A Superpower
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