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.

A Carer’s Struggles!

Duncan F MacGillivray is an autism parent and social worker who felt compelled to set up an autism support charity to help the ever increasing number seeking advice and advocacy. Based in Argyll, ‘Inspired by Autism ‘ is run voluntarily in his ‘spare time’ and aims to offer independent support to the many autistic people and families who have been cast adrift by a failing support system.
In this short piece Duncan expresses his rising disillusionment at the current system and it’s treatment of those who attempt to make a stand.

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Sometimes it seems that everyone whose role can significantly impact on those living with disability, require to be rewarded in one way or another before they will act.
After another tough night as an unpaid carer this sentiment feels strong today as I begin to review some of the current cases at ‘Inspired by Autism.’

Personal and financial gain seem to dominate the goals of so many we encounter on the journey of pursuing the wellbeing of people living with autism and disability. I say this with due respect to the many poorly paid and highly motivated professionals who constantly do their best in a crumbling system.

Offers of support can often materialise as symbiotic in nature – you scratch my back , I’ll scratch yours – and that is nearly always a demoralising experience for those in need.

This week it has been an M.P. who wants his picture in the paper in return for a template letter of support to the DWP from his office staff. (Is that not their job?) Push them for a little more to try and tip the balance in favour of those barely surviving in a system with impossible odds and watch them withdraw. Challenge their party’s policy or ask them to stick their neck out and they will disappear quicker than the humanity of a newly appointed cabinet minister.

Policy makers at government and council level often need autistic people and their families to support their ideas and cost saving schemes but I have long grown wary of ‘free lunches,’ for there are none. Here the currency of choice is again career enhancing publicity backed by dodgy stats as they move on up the ladder without a glance backwards at the chaos and misery left in their wake.

The list goes on – G.P.’s wanting to charge those in poverty for endorsing a legitimate claim for benefits, councillors looking to be associated with grassroots initiatives, principally to score points from their rivals, local authorities whose reputation is the only thing that really matters.

At our charity I guarantee that the only goal and motivation is to act in the best interests of those who seek support. I will challenge and advocate for the wishes and legal entitlements of those affected by autism and disability. Our services will always be free of charge and will not be shaped by funding application’s criteria, nepotism, politics or any ulterior motives, regardless of who attempts to thwart or discredit us.
That’s a promise!

I.B.A.

Feeling the Strain!

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Andy opens the fridge draped in a double-sized quilt and little else. He takes out a block of cheese and hands it to me. I unwrap it as quickly as possible as he noisily makes his frustrations known. I cut a slice to the dimensions he usually prefers but this has now changed it appears. He hands the slice back to me angrily. I try again cutting thicker this time. His wail lets me know I am wrong again. He storms off his displeasure showing no consideration for those still asleep in the house.
It is now 7.30am and Andy has been awake for two hours. Soon I will escape out to my work leaving Jen to take the strain. I feel guilty about looking forward to work.
We have had a couple of bad days and the positivity has temporarily evaporated. The school holidays are always difficult. Andy has been agitated for a couple of days now and although it does appear to be improving, we are all feeling the strain. After taking steps to rule out anything else it appears that Andy is experiencing a period of increased sensory sensitivity. We think it might be visual and possibly associated with the brighter conditions but it is impossible to tell for sure. He has been in his room for the best part of two days with the curtains closed to the daylight. We have been here before of course and will be again I guess, but at least we know it will pass.
The picture this week is a personal favourite. It shows Andy in a quiet moment enjoying the spring sunshine on his window seat. The seat was built by a good friend for my precious boy. This picture reminds me of all the positive things about autism. Sometimes you have to hang on to these!

I.B.A.