Let's forget about Autism awareness

10 April 2015

Dear Friend,

Last week was Autism awareness week. As a parent of a child with autism should I be shouting my message from the rooftops, dressing in a onesie, organising an event/collection at school? Perhaps, but I have to admit to not feeling entirely comfortable with this campaign. Let's forget about autism awareness. Instead let's talk about the real issues that affect families of children with autism.

Increasingly the struggles that we face as parents of children with autism have nothing to do with the big lad but everything to do with other people.

I am not talking about the people who just don't get it.
  • Those who stare: in the restaurant, in the airport, in the queue or at the football party. 
  • Those who ask why you have to stick to the routine or walk a certain way at the park.
  • Those who think you are favouriting your other child because you don't give your autistic son enough cuddles.
  • Those who criticise you for allowing your child to eat pizza again.
  • Those who raise eyebrows when they are playing on their computer game at a birthday party.

We've all been there.

No I am talking about the people who in theory 'should' know better. The people in charge. The ones who set the rules.

I believe that the current special needs system places a huge amount of pressure on parents to become the advocate for their child and coordinator of their care.

When the big lad was diagnosed my expectations did not match the reality!

I expected that a Dr would coordinate his care and make sure he received the support and therapy he needed. I had read that early intervention was the key and I honestly expected a team of Professionals to Immediately begin working miracles with my son.

Almost 6 years later and I have dealt with around 30 different Drs, therapists, teachers etc who have contact with my son.

I have found support.
I have bullied Drs. into therapy programs, despite being told my big lad was not 'bad enough'.
I have acted as the link between professionals.
I have passed on information.
I have coordinated appointments.
I have ensured that we weren't focusing on too much at once.
I have taken my son to different centres, schools, hospitals, groups etc

In effect, I have become the 'expert'.

This is a significant amount of pressure to place on any parent!

I am not writing this for sympathy.

Nor am I a martyr.

I am not unique. I love my son and want to help and support him where ever I can.

I wouldn't let anyone else take him to appointments!

But I can understand why some parents have chosen to opt out of therapy.

It is far too easy to become focused on the what needs to be done and forget about the why and the who we are doing this for.

As a mum, I want my focus and energy to go into my son.

I want him to get the support he needs. But I want my son to have a 'normal' childhood that is not dictated by therapy.

We do receive emotional support through regular parent meetings with bog lad's lead psychologist. We find this invaluable!

Just knowing that someone is there to listen to us in our moments of panic and self doubt or when the big lad is having specific problems.

Someone to turn to when we need advice.

Why can't this mentoring approach be developed further?

I believe that there needs to be a significant change in the system!

When autistic children are diagnosed why can't parents be appointed a lead case worker? Someone with knowledge and understanding of autism and who knows how the system works. Someone whose job it is to lead you towards the correct services, therapies, etc To share information about your child with the relevant professionals. To ensure that there is a multidisciplinary approach to your child's care.

Every family should be appointed an expert to advise them it should not be expected that family members become the expert.

Perhaps if we had chosen to place our son in a 'special' school then our experience would be different?

I believe that because the big lad is high functioning and in a 'normal' school our needs are deemed as not urgent enough.

Is it fair that we are dismissing the needs of a whole section of people? People who have a real disability, real problems but that are not 'bad enough'.

At a recent group meeting a mother shared her experience trying to get funding for her child. She felt that she had to exagerate her son's problems to be believed, whereas a friend with a downsyndrome child from the same school and with a similar intelligence level was awarded the grant without any question.

Autism is an invisable disability.You can not see my child's autism. He looks normal. 

Are Autism parents being treated unfairly by some people in administrative positions?

Parents need support in these circumstances. Not interrogation.

Do you know how difficult it is to spell out all of your child's problems in black and white? It leaves you totally drained.

It is the polar opposite of how most autism parents conduct themselves. We are constantly searching for the positive. Looking for the rays of hope in the cloudy days.

I understand that autism is a spectrum disorder and so is difficult to quantify but it needs to be much easier for parents to ask for and recieve support physically, emotionally and financially.

Let's stop talking about awareness and start talking about support and acceptance for all.

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