What to write? What to do?
I feel humbled by the Down’s community who have made a carpol video which has gone viral for their awareness day. They are all united. #wouldntchangeathing
The autism community is not united. There are so many ‘sides’ to take , so many angles.
Twitter is a terrifying place. The adult autistic community who are out and proud of who they are assert themselves and that’s good. We need the world to recognise everyone within it and that includes the autism community. But, the flip side is that those of us mothers doing our best to help our children to enjoy the world that they live in are often critisised and questioned about how we can understand our children when we don’t have autism ourselves. Perhaps we do too, but that is not a consideration.
I worked as an A & E nurse in my previous life. That is, the one I had before I had four boys with autism. Patients did not tell us that we couldn’t care for them because we had not experienced what they were going through. Does every midwife need to have had a baby in order to assist a mother to give birth? So, why are we as parents sometimes thought to be unable to understand and help our own children?
High functioning, high media profile adults are given the same label, the same ‘one size fits all’ diagnosis as those children and adults who may never speak or live independently, who may additionally have learning difficulties. Autism is a single word expected to cover a huge breadth of ability and disability. That does not help to unite the community.
I am, as most people will know, who follow my blog and Facebook page vehemently pro ABA (Applied Behaviour Analysis) early intervention. My boys were all non verbal and destined for institutionalised lives when diagnosed with classic autism at the ages of 2 and 3. ABA has totally changed their lives and their outcomes. This is not a blog to wax lyrical about ABA and I know for some it may not be the therapy they choose for their child, but, I believe it should be a choice for anyone who wants it. Those who do not want to do it, should refrain from critisising those who do and remember that the government would not fund a therapy from public money which had not been scientifically validated.
I do not seek to tell anyone what they should do but rather to offer suggestions and personal experience and would not openly judge others for methods they believe to be right for their children. We all need to support each other, not argue with each other.
A word often used by everyone in the autism community. It is want we all want. Acceptance for what is perceived by some as difference. #differentnotless.
But does acceptance mean we stand back and do nothing to help those unable to communicate?
Do we want a cure? Do those with autism want a cure? This is the area which divides us all. The most touchy subject. The one that causes the most arguments.
Would we cherry pick if we could? the ‘good’ bits and the ‘bad’ bits of autism? How would we even define what those are? Ask anyone who has autism or whose child has autism and you will get a different opinion.
We need to unite. We need the autism community to unite. We need to present a united front.