For the last 5 years when you look at engagement within the autism community in a parental/voluntary capacity I have been it. Just me. It's been an awesome responsibility. At least that is the way it has felt to me.The way engagement was configured meant I was sitting around meeting tables all by myself.
The good news ( I hope) is that we will soon have an Autism Partnership Board in Sunderland. There is a consultation meeting to see what our autism priorities here in Sunderland are, on March 4th.
When the Board is up and running we will have, I am assured, meaningful involvement and engagement with the Autism community in Sunderland. 'That is good news' I hear you say. And it is BUT, and yes there tends to always be a but with me. BUT by the time the Autism Partnership Board is up and running, all of the important decisions about us, that will impact on our lives for the next few years, will have already been made without us.
Because I have been 'it' when it came to engagement for the last 5 years I am now in possession of a lot of facts and figures that are now only difficult to get your head around if you are coming into this cold, but are not always easy to explain to other people without them either falling asleep while you impart your knowledge, or without them giving up listening half way through because I can go on for hours.
But there are some facts that we really need to be mindful of in Sunderland, things that have shaped our future before the Autism Partnership Board has come into being.
- Fact The Royal College of GPs chose Autism as a priority for three years between 2014-2017. They launched a three-year training programme to raise awareness and better educate its 50 thousand members. The Royal College itself said ' Autism patients 'failed by the system' Dr Carole Buckley, from the Royal College of GPs said in January this year 'If we treated people in wheel chairs the way we treat people with autism, we'd be in court'
- Fact The new Sunderland Clinical Commissioning Group (CCG) have not chosen autism as a priority in their refreshed plan that will continue their work until 2018.
- Fact In some age Groups here in Sunderland the prevalence rate for autism is much higher than the national average of 1 per cent. In some age groups our percentage is 1.5 and 1.7 per cent. Almost twice the national average. But autism in Sunderland has not been identified as a priority by our CCG.
- Fact Local Authorities have to include autism into their Joint Strategic Needs Assessment. This needs assessment is how services are commissioned for people with different conditions. (6.9) Autism Strategy We expect each local area to develop its own commissioning plan around services for adults with autism that reflects the output of the JSNA and all other relevant data around prevalence.
- Fact Autism will be included into the next JSNA to be updated in March this year. No one within the Autism Community (to my knowledge) has been included in any of the decisions being made about how autism will be included into the JSNA. The Autism Strategy 2010 - It is essential that the views of adults with autism and their carers are sought and taken into account in the development and delivery of services locally (6.15) We expect each local area to develop its own commissioning plan around services for adults with autism that reflects the output of the JSNA and all other relevant data around prevalence (6.26) In some age groups here in Sunderland the prevalence rate is almost twice the national average.
- Fact Adults with Asperger Syndrome and High Functioning Autism have now been removed from the Physical Disabilites Team and will now come under the umbrella of the Mental Health Team. This happened without any discussions or consultation with the autism community in Sunderland.To date Autism-in-Mind has been unable to find out if the move to Mental Health for adults with AS/HFA is a transition into a generic mental health services or a service that has been differentiated to meet the needs of adults with autism.
At the last meeting of the Local Autism Working Group meeting that I attended, where I voiced my concerns about all of the above important decisions being made about us, without us, I was advised to 'Let it Go' No good looking back, time to look forward to the arrival of the new Autism Partnership Board.
Last night at the Sunderland Clinical Commissioning Board Local Engagement Board meeting the same thing was said. No good looking back, we can't undo what's already been done - been done without us.
So again I'm being told to 'Let it Go' When I voiced my concern about autism not being included as a CCG priority I was informed that they can't put every condition as a priority. But does every other condition have a prevalence rate that is way higher than the national average?
I have been an autism Mother for 28 years. It took me 13 years before someone actually listened to what I was saying about the eldest of my two autistic sons, and finally gave him a diagnosis. Ever since my sons were diagnosed I have had to fight to prove their need. Now I am fighting to prove the need of a whole community and my one man bad routine is starting to wear me out. My drums have been banged so many times they are at the point of splitting.
Very important decisions about autism have been made prior to the arrival of an Autism Partnership Board. Those decisions were made during a ten month gap when no Local Autism Meetings were held. Who made those decisions about us without us? If I have to 'Let it Go', and if we can't look back and undo what has already been done, then all of the important decisions about us without us, will already be in place when the Autism Partnership Board in Sunderland opens its doors.
If we are to have meaningful involvement in the future the autism community in Sunderland needs to raise its voice and we all need to speak with one voice, not one lone voice, but the voices of many. Maybe then we will be heard?