Different Perspectives; Petition Update.

FB17BA40-4549-4770-99F4-6560BB0598E7As many of you will be aware I had petitioned the Scottish Government earlier this year seeking real improvements for people living with autism. You can see the petition  here. The next stage in the process is that the petition committee seek further information via submissions by the various parties involved. This apparently involved writing to local authorities, of which there is 32 I think. Below are the submissions received up to the cut off date. It appears around 2/3’s of our (your) local authorities never deemed the petition worthy of a reply. I thought I’d make the submissions available for public comment ahead of submitting my response to these. Something that really niggles is that there is rarely unfettered opportunity for autistic people and families to comment outwith the narrow and controlled channels of invitation only events and carers groups who typically are not representative of any carers I know. One general observation I would make is that autism policy in Scotland in currently a real mess with huge variations across different areas. There is also very conflicting, confusing and inconsistent application of current legislation in this area. I would be most interested in any feedback.

 

 

 

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A window on autism.

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Andy is growing into a young man. He is almost as big as me and soon will tower over me. Although he is learning to cope with the world around him a little better at times, he still exhibits many characteristics associated with his autism. He always will. 

 Severe hyperactivity and sensory processing differences can be more noticeable when they are affecting a grown up person. Repetitive behaviours and the need for unusual routines can be less accepted when a person is bigger and louder.

Andy will require a lifetime of support from his family and carers. He will also require a lifetime of understanding and acceptance from his community.

I.B.A.

Charity Bake-off raises £265 for I.B.A.

Charity Bake off at SGE Esplanade Hotel raises £265 for Inspired by Autism!

  Last Sunday we had a wonderful day at the Inspired by Autism Bake off event that took place at SGE Esplanade Hotel in Dunoon. Rebecca MacRaild, the hotel’s events manager and a parent at Inspired by Autism came up with the idea and used her talents and contacts to set up this fun charity event.

 The day featured competition in several categories that produced an enthusiastic response from the areas gifted bakers with a truly fantastic array of scrumptious cakes. Professional bakers Yolanda and Helena needed all their experience to pick the winning entries in a competition of a very high standard. Many local crafters also attended paying a donation to have a table on the day. We had live music, an exciting raffle, delicious sandwiches and nibbles and a chance to sample those cakes after the judging !

  For my part I was able to talk to people about autism and the support services we provide and to eat a fair amount of cake also!

 It was a real family day and my precious boy made an appearance which was for me  ‘the icing on the cake!’ Sorry!

  Massive thanks to SGE Esplanade Hotel, Rebecca, our lovely judges, the crafters, Tim , David, Poppy and all our winners, musician, hotel staff and especially the bakers and all who attended and contributed to such a great event.

As a charity Inspired by Autism relies on donations to cover our overheads. Over the years people have been very supportive of the work we do and services we provide.

It is of great importance when providing advocacy that the organisation remains independent of potential funders agendas. At Inspired by Autism maximising the wellbeing of autistic people and families will always be the priority.

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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

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