Degrees of Autism

My child has autism.

What does that mean? What does it mean to your child, to you as a parent, to the person you are saying it to?

It can mean very different things to very different people. The words ‘autistic spectrum disorder’ are supposed to cover all and everyone. From the non verbal severely autistic child diagnosed at the age of two to the fully verbal adult holding down a job and a family diagnosed in middle age. How can one single word ‘autism’ be meaningful?

In 2013, the term Asperger’s was removed from the DSM (Diagnostic and Statistical Manual of Mental Disorders). The all encompassing term, autistic spectrum was devised to cover both Asperger’s and classic autism. We certainly need the term Asperger’s to disappear from our vocabulary after Hans Asperger was recently revealed to have aided the Nazis in killing children with the more severe form of autism. But, we do need some clarity in what autism means and perhaps some new labels which could be applied when a diagnosis is given

There have been other labels used since then. High functioning and low functioning autism. What on earth do they mean? You can’t fit anyone neatly into those categories either.

This week a new, revised autism diagnostic criteria  (ICD Version 11) most used in the UK was published by WHO ( World Health Organisation).

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A baseline to indicate the sub section of autism a child may belong in would help schools and those seeking EHCPs (Educational and Health Care Plans) in the UK. .

My boys at diagnosis would all have started in a category quite far down the list – autistic spectrum disorder with disorder of intellectual development and with absence of functional language.

Surely children with this level of autism should get a diagnosis as young as possible by the age of two or three as all my boys did.   They could then be offered an intensive early therapy such as ABA (Applied Behaviour Therapy) perhaps even before getting an EHCP.

Because we were lucky enough to come across ABA when my boys were first diagnosed and it was so successful for them, they would now certainly be re categorised as – autistic spectrum disorder with/without disorder of intellectual development and with impaired or mild impairment of functional language. Which means they still straddle across the categories but at least it gives an indication of the current severity of their autism.

If the sub divisions were to be numbered it would be even easier as you could further sub divide by stating a combination eg 3/4 on the scale. There will never be an exact fit for any child on the autistic spectrum but some clarity would be so much more helpful.

How wonderful too at annual review to be able to say that a child has moved up a category because of a therapy like ABA.

I think most parents would embrace some better definitions if only to ensure they get the help and support they need for their child without battling the LA (Local authorities) continually.

It might even make the process of applying for DLA (disability living allowance) or PIP (personal independence payments) more straight forward.

We need a much quicker path to autism diagnosis in this country but I would also welcome these categories being given at diagnosis and used as indicators of need and severity.

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It’s Carers week. Who cares?

How many of you, like me, can’t work because they are full time carers?
 
How much are we worth?
In order to qualify for Carer’s Allowance you have to care for someone over 35 hrs a week. In other words, a full time job. But…do we only care 35 hrs a week? Never.
 
We are worth £64.60 a week.
 
That is what we are eligible for if we cannot work and earn an income.
 
I know many parents give up work or go part time when they have children at home. For some that is a decision they can afford to make. To give up income. Others struggle to pay childcare while they work.
 
For most of us who have children with autism, there really is no choice. We have to look after our children ourselves.  The option of a shared childminder is not a possibilty for a nonverbal child with severe autism. Nor is leaving them with a neighbour while you pop to the shops.  In fact, options are very limited unless you are fortunate enough to have family members able to help.
When my twin boys were aged two and not yet diagnosed, we were asked to leave a local nursery after two sessions as they couldn’t cope with them. We were left with no hours at all when someone else could look after them.
For us, there was a silver lining in that cloud. We were forced to confront the boys’ issues, and after getting an autism diagnosis for them both a few months later, we discovered ABA (applied behaviour analysis) which was to be the saving and the making of our boys.  But, ABA tutors were not childcare. That still fell to us, the parents.
If you ask social services for help, you may be able to get some direct payments. Respite hours to pay someone to look after your child. In our case, we got four hours a week per boy.
Carers are worth £64.60 plus a break for four hours a week.
(Oh, and I only get one payment for being a carer for four boys, in case anyone is wondering).
It’s carers week. What have you been offered as a carer this week? I haven’t received any offers of additional help. Have you?
This week will be the same as any other week.
In my book, there is a whole chapter ‘How to get help and support’ explaining how to claim various allowances, how to get financial help and just as importantly, how to get emotional help and support as a parent carer.
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