Parallel Universes.

Sometimes it feels that there is little left to say about our lives with autism. Perhaps in previous times, I have been too prolific in my constant thinking, reflecting, blogging and sharing of experiences. Recently I’ve had little positive to say about autism policy in Scotland. I’ve grown tired of professionals putting a positive spin on the state of play. I very rarely experience autistic people or families agreeing with those who draw a salary from the ‘autism industry’. Politicians generally have the status of snake oil salesmen for people living with autism and not without good reason sadly.
For us, we remain as anxious as ever about the future for our precious boy. In recent times we have had an unwarranted social worker allocated with no experience of autism, being ignored or passed from pillar to post by our MSPs when support has been sought and discovered just how poor CAHM’s services continue to be. A petition with a powerful message from over 2000 people affected by Autism has been buried by our Scottish Parliament who clearly doesn’t want public opinion unless it can be used for political gain.
Like so many though we just keep on doing our best to keep challenging inequality and providing support, to keep trying to raise awareness, understanding and acceptance.
Inspired by Autism had a busy and productive drop in this week. It is so therapeutic to be among people who truly understand and who are willing to offer practical and emotional support to each other.
Engaging with ‘professionals ‘ and policymakers has so often produced such disillusionment and disappointment I feel inclined to keep my distance these days.
Until there are indications of change that reflects those living with autism’s needs and wishes we will remain in parallel universes.Dad, Andy & Bailey

I.B.A.

What right do we have?

B9B0A542-6B2D-415B-9021-588F90413AEBAndy continues to struggle at the moment. Agitated, pacing, withdrawn from interactions and activities. It’s heartbreaking to watch and incredibly tiring to keep supporting him. I would do anything, give everything to take away his troubles.

Accessing medical or psychiatric support is very, very difficult indeed nowadays, we are finding out. Put simply, already over stretched services are geared towards neuro -typical patients. Barriers are more than sensory, social or fear of the unknown however, as much as these are highly significant. No, the barriers are more structural and embedded in services where knowledge and understanding of autism is at best very patchy. Where understanding is limited medical staff are defensive and often dismissive. Finding pockets of autism friendly support is a lottery with poor odds.
Medical environments must be among the most challenging for autistic people and the process driven procedures leave little room for any flexibility in approach.
The Scottish Autism Strategy had among its initial 2 year goals the following statement.
“Access to services which understand and are able to meet the needs of people specifically related to their autism.”
This should have been in place around 2013/14 although how you would test this is anyone’s guess. These initial goals were of course conveniently ditched in favour of even broader outcomes, but surely no one could claim that this situation is even improving?
Medical care is a basic right under Article 24 of the UN Convention on the Rights of the Child. It categorically states “Every child has the right to the best possible health. Governments must provide good quality health care, “
If only this were true for autistic children. We live in hope.

I.B.A.