2. The Diagnosis

Seven months ago my sister and I were given an informal diagnosis, derived from an *AD-I undertaken by a psychiatrist from our local Child Development team, that my 12 year old niece was on the autistic spectrum.  My sister looked shell-shocked.  I on the other hand had ignored the little bird that had whispered the word ‘autistic’ in my ear when she was seven, as my knowledge of the condition centred around the media painted image of a child with learning disabilities who was in their own world, which she was not, or so I believed.

‘We would advise that she joins you for the diagnosis at this stage’ the psychiatrist suggested, as she had been undergoing tests with a psychologist in another room.

Join us she did.  However, even though every child is different I would suggest that if you have a high functioning child on the autistic spectrum, do not let them be part of the feedback about whether or not they are on the spectrum.  In our case my niece’s body language on receiving the news suggested that she had been aware all along, but had managed to keep her behaviour under wraps.

From that day forth she was a different child.  It was as though she had decided to let us have it, as we felt the full force of what gradually built up inside of her on a daily basis.  During the seven months wait for the **ADOS test, the meltdowns were regular, the stubbornness greater and the sensory issues heightened.

The most disappointing factor centred around the lack of help for the child.  It was fine that her mother and I were being offered help to manage her behaviour, but no one mentioned helping her manage her behaviour.  There had to be help out there and my journey to find out what, if any, started here.  I knew what she needed.  It was now about whether it was available and if so, what I had to do to get it.

The professionals stance is to manage the child by giving the parent/carer the tools to do so.  What they do not factor in to their diagnosis is how to do this when their parent/carer is also ill and struggling to cope or manage their own illness?

**An ADOS Test is an Autism Diagnostic Observation Schedule and occurs prior to the *AD-I (Autism Diagnostic Interview), for parents/carers, which takes place prior to the ADOS test for the child/adult
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About 95 Frames per Second

This blog is about my caring journey, looking after family members with high functioning autism / aspergers, multiple sclerosis, getting older, etc. in the midst of trying to function normally. Hopefully along the way you will find my experiences useful. 95 frames per second is roughly the frame rate life runs at.
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