Each year as Autism Awareness Week Approaches there are lots of questions and comments raised? Many feel that awareness is pointless as everyone has heard of autism, however I would argue that many are still unlikely to have a good understanding of it. There are usually debates over the puzzle piece icon too. Another common point is that Autism Awareness is important every day and this week is no different. However the reality is more people will see and read about autism during awareness week simply because larger organisations and the press will take more notice this week.
So love it or hate it here is my autism awareness post and why I think autism awareness is still very important.
Autism is not an illness
My child’s life is actually in danger due to misunderstandings, the world is less safe for them and they face many barriers because people do not understand that autism is not an illness or something that is wrong.
Just last week the National Institute for Health and Care Excellence (NICE) published guidance for doctors and hospitals about when to send people with Coronavirus (Covid-10) to “critical care” wards. The guidance said they need to assess someone’s ‘frailty’. The way to do this is to consider how much help people need to do things like make dinner, washing and dressing themselves. The thing is there are many autistic people who will have difficulties in these areas but it does not make them frail or less healthy.
Thankfully after many concerns were raised NICE has updated their guidance to make clear that doctors shouldn’t be using the standard frailty test for autistic people who are seriously ill. They should carry out individual assessments for each autistic person. Whilst it is great that the guidance has been updated frontline staff will be under increasing pressure and with limited time or ability for individual assessments.
Many health professionals have had little or no training on autism and many SEND parents will be able to give examples of health professionals not understanding autism. There are many terrifying examples a local one for us was Oliver McGowan. The Learning Disability Mortality Review commissioned on behalf of the NHS found failings had taken place in 1 out of every 8 deaths ranging from abuse to treatment delays.
Autism is a lifelong condition
People on the autistic spectrum face a world that doesn’t understand them and discriminates against them all the time. This time last year the DVLA suddenly changed their guidance making it mandatory for people with an autism diagnosis to disclose this to them. This was in addition to stating that not disclosing meant you may be driving illegally and could be fined up to £1,000.
As you can imagine this caused instant panic amongst many and a lot of stress. The communication was appalling and very misguided. What they failed to understand is that autism is a lifelong disability, if someone has passed their driving test an autism diagnosis cannot change their ability to drive. Again after much uproar from the autistic community the DVLA apologised and changed the guidance to confirm that autistic drivers only need to inform the DVLA of their diagnosis if they believe their autism could affect their driving.
Autism is not a mental health condition. However many autistic people develop separate mental health problems often due to inappropriate support. There are significant numbers of autistic adults and children in mental health hospitals receiving the wrong support and being treated worse than prisoners.
The system is broken, I was in tears watching Stacey Dooley on the Psyc Ward last week. She was talking to a young girl who had been there for months and asked what she thought would help her. The girl said she had never really come to terms with things in her past and thought talking to a therapist would help. Obviously Stacey replied ‘do you not have a therapist here’, her answer was no, the therapist had gone off sick some time ago and not been replaced. How can someone improve their mental health at a mental health unit with no therapists! I could go on about the high numbers of school exclusions amongst autistic children, the levels of children out of school completely due to lack of suitable placements but you can read more about the SEND crisis here.
Sadly none of this shocks me I have seen first-hand and continue to see on a daily basis immense cruelty towards people on the spectrum in the UK in 2020. It angers me and I will do all I can to change it but the biggest issue is a lack of understanding of autism. This is why more awareness is so important.
Autism is a spectrum condition and it presents very differently in each person. There are many common autistic traits but there are no universal traits.
Autism is not an illness you shouldn’t be looking to cure it. Autism is a lifelong development disability. You can’t grow out of it and a diagnosis changes nothing about who that person is.
Autistic people are different. They are neurologically different and as such their brains work differently to neurotypical people. As such they will learn and behave differently and sadly most dismiss them as wrong, badly behaved and so on rather than taking the time to look at the world from a different perspective.
If you ask my non-verbal 6 year old to touch his head he won’t do it, if you show him either by doing it yourself or by lifting his hands he is more than able. If someone learns differently you need to teach differently.
We tell neurotypical kids to stand out, be different, think outside the box and put your stamp on the world. Yet so many want my kids who are all those things to be quiet, stand still and to blend in. I want my kids to grow up in a world that loves them for who they are and allows them the freedom to be different. The only way that can happen is for us all to appreciate there is a different way to be and a different perspective on life than our own.
Over the coming week I will be sharing information about autism on Facebook, Instagram and Twitter as well as another post coming up on this week – What small change can people make to be more inclusive of those on the autistic spectrum. So please keep an eye out and make an effort to share some autism awareness over the coming week.
Please note there are a number of very questionable autism organisations so please be careful if you donate to anyone / support campaigns. Each year many people joined in the campaign from prominent US organisation Autism Speaks to ‘light it up blue’. Autism Speaks advocates ‘cures’ for autism and spends most of its money on biomedical research. Please be careful who you choose to support or share information from.