Autism and the huge failings of the system.


It’s estimated that around 700,000 in the uk are on the autistic spectrum.
That’s a lot of people.
But autism is still an invisible disability.
It’s misunderstood , it’s often not understood atall.
And there is a vast lack of help and support for people with autism.

It’s a very real disability , as it’s a spectrum disorder it affects people in so many ways , there are so many needs that just aren’t met.
And there can be a number of conditions that go hand in hand with autism. Making an already difficult condition all the more difficult.

I have two sons with autism.
When my 17 year old was 9 it became obvious that there was a problem.
His difficulties mostly manifested at home. So while he was coping at school he was ticking time bomb at home.
He was difficult , aggressive , often violent but because he was holding it together at school and is extremely bright ( he has an exceedingly high IQ) I just didn’t get any help.
He’s been under CAMHS since he was 9 and has been medicated for years for depression.
As time went on things got worse , at 14 he could no longer cope with school and dropped out.
Now he’s a recluse.
He cannot socialise atall , and he also has social phobia , social anxiety , tourrettes , OCD and now depression.
He wasn’t diagnosed until this summer.
So he had 9 years when he desperately needed support and had none.
He’s now supposed to be receiving support to transition to adulthood. Again there’s no support.

This has been a massive failure.
I have fought hard for 9 years but every step along the way I’ve been met with excuses of underfunding , understaffing and under training.

My 8 year old was diagnosed this summer after a year of being under CAMHS.
That was after I’d made an official complaint. He has autism and tics.
His difficulties were more extreme he was almost uncontrollable at school.
His sensory issues meant that he was in a constant state of meltdown.
I’ve now deregistered him as school is just far too traumatic for him.
There was a total lack of support for him at school. Not because school didn’t try but because they didn’t have any resources.
All the professionals that should have helped were difficult to get hold off , all had differing opinions and were frankly not that interested.

Our CAMHS consultant is impossible to make contact with. He would often be emailed and called on my behalf by the school , the PRU , the ed psychologist , our youth worker asking for urgent help and would almost never reply.

When my boys were diagnosed we were given a leaflet on ASD and sent on our way with the promise of 3 months reviews.

My 17 year old is about to turn 18. He’s already been discharged by CAMHS. And at present isn’t under anyone.

Diagnosis needs to happen quicker , with professionals working together on the same page. And the system needs to be more transparent so parents understand what’s happening , when and why.
The statementing procedure needs to be quicker , clearer and better explained.
Schools need more information , resources and training to cope with ASD.
Unlawful exclusion shouldn’t be happening , but it is ,
Because schools either don’t understand or don’t have the help to cope with ASD children.
Children are excluded for *bad behaviour * which is actually a result of their disability.
Children are also excluded from being in the classroom and taking part in activities in school. Because of their disability.
This is not lawful.
In some cases a child may only be allowed to attend school for a minimal number of hours a week , again not lawful.
Professionals need to look more at the whole picture. Not just reports from school or home but putting the pieces together.

The ” professionals ” need to do more to help parents access help and support. It’s not easy to do this alone.
And there should be a wider umbrella of care.
My 8 year old needs occupational therapy , he needs help for his worsening tics and he needs to see a dietician as he mostly only eats corn flakes. I have to chase these things up myself. I have to ask for referrals and then chase these referrals.

The use of the word mild is far too common.
A child may be verbal , bright and ” high functioning ” but their autism can be debilitating in so many ways.
What if a child is verbal and bright but cannot cope with being outside , on a bus , in a shop , in a school ? What if that child struggles to eat anything but cornflakes.
What if a verbal , bright child has been in his room for 4 years because the world is just too difficult for him.
What if a verbal , bright child has meltdowns that are frankly dangerous to themselves and others?
Is that mild ?

I have no personal experience of non- verbal / severe autism but I dread to think how little support there must be for affected families.

The professionals need to spend more time in the home to understand properly how someone is affected by autism.

There needs to be much more ( at present there is none) support for people with autism in the home.
To help them cope , prepare them for adulthood and most importantly to understand their condition.
A leaflet just isn’t enough.

And what about the siblings ?
Siblings often need help to cope with and understand autism.

They need some support because ( I know , my boys have 5 siblings ) it can be very difficult to live with someone with autism.

From what I know there needs to be a big shake up of the whole system. Autism shouldn’t be a hidden disability.

There should be • diagnosis
• support
• care
And it should all be under one umbrella.
And it should happen quicker.
I don’t know how to make people listen or how to go about trying to make these changes happen.

But I’m willing to try.
I’m willing to make it my business.

Raising understanding is unfortunately not enough. We need to fight for the rights of those with autism and those affected by autism.


7 responses »

  1. I think you’re right – we’re all doing what we can to raise awareness but at the end of the day there’s very little support out there. You’re right, the whole family needs support, and that includes you too! We just have to do the best we can on the days we feel positive enough and not feel bad about just coping on the other days x

  2. We always disliked the term “high functioning”, and sometimes asked that it be left off when applying for services. It sends a message that it is just a slight problem, well with most, there is nothing slight about it.
    You are so right, services should be consolidated. My son
    recently chipped a tooth during a seizure, the cost is $1,100 and insurance or Medicaid won’t pay because he is over 21. He will have to make payments out of what little he has. Very unfair. Thanks for the post.

  3. I agree totally with this post. We are stuck in a cycle of him having a massive meltdown….being re-referred to cahms…it taking weeks to come through….him coping ok again by the time it does….them signing him off….a month or so later him having a massive meltdown…..being re-referred to cahms…etc. When he does see someone they just repeat the same stuff; how to recognise you’re getting angry, ways to calm down, etc. The same crappy stuff for seven years.

    We are on day four of an unlawful exclusion at the moment while my son’s school figure out the best course of action. I have spoken to the Social and Communications education officer who doesn’t seem to have a clue. She wants to just ‘throw’ my son back into the situation despite the fact it is destroying his self esteem. Apparently this is what they usually push for. It’s obviously some generic flow diagram that they use and don’t take into account what is best for the child at all. They have told me he won’t get a statement as he is above or meeting the National Average academically and our LEA are reluctant to agree to them at all. If I wanted to push for a statement it would have to be in over a years time once he has transitioned and been in his high school for a minimum of two terms. His meltdowns would lead to a permanent exclusion on the first occasion in high school so what is the point of me sending him there? These professionals just don’t seem to have any understanding at all. I am ‘pulling him’ from the system to home school him as he just won’t be able to cope in a huge comprehensive. He can’t cope now in a tiny primary.

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