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Friday, 18 February 2011

What IS this stuff falling from the sky?


On closer inspection I see's bullshit.

Sorry to use a Naughty Word, but sometimes you've gotta call a spade a spade.
And believe me, this stuff is falling by the spadeful.

For the benefit of anyone who doesn't already know......and where the hell have you been, might I ask?! beautiful daughter aka Daisy is autistic. With whistles and bells on. When she was diagnosed I was handed a sheet of paper with a list of characteristics on it. I mistakenly assumed that I was reading about Daisy's condition, it was only when the Paed. made a comment that I realised that I was reading about my daughter. She ticks every single box....and then some that aren't even on the list! She has Pathological Demand Avoidance Syndrome (a shade on the Autistic Spectrum). She has sensory issues. She suffers from Separation Anxiety.  She also presents many characteristics of MCDD (Multiple Complex Developmental Disorder) but her autism overlaps and hides it in a clinical setting. I am not too bothered by this...we have enough labels attached to us already, who needs another one?

So, it is clear then, that Daisy isn't quite NT (Neuro-logically Typical)?
But, and this is the important bit, her disabilities are hidden.

If you saw a photograph of Daisy you wouldn't know she was different.

If you saw Daisy happy and playing, you would think she was just another 9 year old.

If you saw Daisy kick and bite and scratch and verbally abuse me, what would you think? That she is disabled?
Or just spoilt and naughty?

If you saw Daisy weep with frustration, what would you think?
That she is disabled?
Or just a brat who can't get her own way?

If you saw Daisy run into the path of a car, what would you think?
That she is disabled?
Or just the thoughtless child of a careless mother?

If you saw Daisy in a wheelchair, what would you think?
That she is disabled.

It's so easy to label children as "naughty" or "wilful" but how many of those "spoilt brats" having a tantrum in the supermarket are actually autistic children suffering from anxiety levels we can only wonder at? The answer to that question lies with the person (funnily enough, quite often the mother) with the child. Watch her. Listen to her. She will not lose her cool; she knows it's pointless. She will not take any notice of you; for her (at that moment) you are not there, she is focusing on her child and it's awe-inspiring anxiety. She will not attempt to argue with her child; she knows that cannot help either the situation or the child. She will simply be the whipping boy of her child's terrifying anxiety and will take everything her child throws at her until the moment has passed. Then she will simply carry on as though nothing has happened. If she does any or all of these things, then try and catch her eye; smile at her, wink at her, nod your head at her, run impulsively to the flower stall and buy her the biggest bunch of flowers in the store but please, do something! Don't assume anything, just let her know that you think she's amazing and tolerant and kind and loving and everything that she might doubt she is. Because she is doing an incredibly hard and thankless job simply because she loves someone enough.

The life of a full-time carer is tough. We are paid a pittance and save this country millions and millions of pounds every single year. Yet, there are plans afoot to make it even harder to raise a disabled child.

Our glorious leaders (at the time of writing I can blame David Cameron) have decided it is time to reform the benefits system in "this green and pleasant land" of ours. The universally detested DLA application form is to be scrapped and replaced by....and I never thought I'd say this...something worse!  Not a form this time, but a face-to-face assessment. Anyone who has even the remotest connection with an ASD person knows that this is NOT going to work. Period.
One of the key ingredients in the ASD mix is "poor social skills" an "inability to interact". Yet we are expected to push forward our ASD people and hold them up for inspection.
Are you disabled enough, ASD person? You don't look it.
You can speak, ASD person.
You have no problems with mobility, ASD person.
You can read and write, ASD person.
You can dress yourself and go to the loo, ASD person.
You seem normal enough to me, ASD person.
Now go away and let me deal with someone who really needs my help.

But what about the disabling anxiety?
The no understanding of cause and effect?
The fact that ASD people can be a danger to themselves and others?
The fact that being able to walk doesn't make you safe when you don't understand that you can't walk in the road.
What about the fact that you are housebound if you don't have a car because public transport is unsafe for some ASD people.
The crippling fear of being anxious about everything?

Hidden disabilities are just as cruel and painful as visible ones, but by their very nature it is very hard to assess them. Especially with an ASD person. Many ASD people put on an "act" to appear normal for a period of time, but it is always unsustainable and always results in a massive melt-down, usually when the ASD person is at home or with a person that they feel utterly comfortable with.

This face-to-face assessment will damage so many ASD people and their families.

Daisy and I were granted "indefinite DLA" last year as it was finally recognised that autism is for life. Looks like I am going to have to fight that fight again.....

This reform is wrong for US, for anyone who cares for an ASD person. It is one-sided and oblivious to the needs of the very people it is supposedly designed to help.

This bullshit needs to be re-directed to my rose bushes, at least there it will do some good.


  1. This is just amazingly well written. It reminds me to be patient with situations I clearly can't control. I know I can get impatient, as I have no children. But you have reminded me that not all disability needs a wheelchair or a disfigurement that is obvious. I know this, I work on a daily basis with these kids, but sometimes, when I am NOT at work I can lose patience... my heart to you and the struggle you and Daisy navigate through life with...

    all my love...

  2. Big hugs across the "pond" to you, my dear!
    One of these days we are gonna give them to you in person!