How helpful is Autism Awareness Month really to autistic people?

It was Autism awareness week last week here in the UK, in the US it lasts a whole month and will go on for the rest of April. World Autism Awareness day was 2 April.

This event means different things to different people and some in the autistic community prefer to call it Autism Acceptance and light up gold instead of blue, others hate it all together because they feel they are not included and the information shared is not how they see autism or themselves plus it has come to be associated with autism speaks, an organisation much hated by many for there views on ABA.

I must confess I don’t much like the name but maybe that’s just because of how ‘awareness’ of autism is generally interpreted and how it seems to be about autism rather than centred around autistic people?

At this time of year social media is full of graphics on autism traits and signs. This grates on many autistic people who understandably don’t want to see themselves described as a list of issues. Added to that of course is these lists tend to promote stereotypes and not recognise individuality. Autism awareness week/month can also make some feel less understood and accepted. This is a tweet from my brother;

“Was trying to think of something to say about #AutismAwarenessDay but in my experience most people I tell I have autism still judge me like I’m neurotypical. To them its just a tag or excuse & they have no understanding or sympathy. You can’t force awareness on the ignorant.”

As a allistic (non autistic) parent to an autistic child my attitude towards autism has changed and is changing all the time. It is not a case of learning about autism from books and then knowing it all, its about listening to my son, my brothers and autistic people in general, hearing their often very different points of view.

Its also about being willing to be open minded and change perspective, treating people as individuals and see the positives not just the challenges, it is about considering what an autistic person may hear when autism is discussed and how they feel as a community about the current narrative.

I do think that awareness is needed though, I believe we need to be far more aware of how autistic individuals;

  • Feel when they are spoken about without being included in the narrative.
  • Have a right to their own ideas on how they wish to be seen as a community and as individuals.
  • May feel like a persecuted minority.
  • May of suffered at the hands of professionals, institutions or society (perhaps all three).
  • May feel they have not or are not listened to.
  • May have differing views about autism to you or to each other.
  • Have differing experiences to each other..
  • Wish to have their skills and abilities recognised rather than just their challenges.
  • May be justifiably upset and offended at the idea that they are some how incomplete or need to be cured.

Until we, as a society, insure that the autistic community and the individuals within it have their own voice properly heard and are represented in all things that impact them including whether or not to have an awareness or acceptance day or week or month then we are showing no awareness or acceptance of autistic people at all.

Whatever your personal connection to autism I feel we should all be mindful of the autistic communities self adopted slogan of ‘Nothing about us without us’. And I believe that goes for parenting too.

Further reading

Chris Bonnello of Autistic Not Weird put together THIS album of great tips of how to help autistic people to feel valued, supported, nurtured and better understood.

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