Monday, 5 April 2021
Autistic Community
Tuesday, 2 April 2019
World Autism Awareness Week, again.
It's the start of World Autism Awareness Week again...
Here marks more garbage on social media about autism with jigsaw puzzle pieces, vaccinations, Applied Behaviour Analysis, our suffering and cures.
Many of us who live independent lives and "appear normal" have daily struggles that we mask to fit in, to get by. Get aware. Find out about autism first-hand.
Here's a pro-tip. Look on Twitter at #ActuallyAutistic where you can read the postings from autistic people. See their concerns, their joys and life experiences in how autism affects their lives. These are first-hand accounts from autistic people with the cognitive ability to engage on Twitter (although they may not all live independently). It's worth taking a look.
Did you know an agency in the UK government recently discriminated tens of thousands of autistic people with no warning? The DVLA recently then backtracked a decision on ruling autism (and ADHD) was a mental disorder. I had to fill an M1 form disclosing my imaginary drug/alcohol issues and never happened stays in mental hospitals. Failure meant my clean 17 year old driving licence revoked. Thankfully the autistic community lobbied well and the DVLA changed the rules where you must only disclose your autism diagnosis if it negatively impacts on the quality of your driving. Finally some sense.
This wouldn't have happened if those making the decision were aware of what autism actually is (and what it is not). Awareness comes from including autistic people's voices in the services we use rather than people speaking for us.
Don't assume you know what I need. Don't tell me what I need. You might be surprised about I need. Ask.
I'll help you out about workplace reasonable adjustments.
Look at my presentation I delivered at #Autscape, a conference about autism for autistic people: https://lnkd.in/dArS6WW
I may expand on this last point in another entry.
Thursday, 1 February 2018
"People who suffer from autism..."
I see people from the autistic community (as if there is actually a formal association!) angrily counter that they do not 'suffer from autism'. The argument is that autism is not a disease and we don't have common observable symptoms as such, for there are infinite ways autism can manifest.
What is the solution? I think we need to be realistic that society can only do so much to help us autistic people get on in life. There are going to be plenty of scenarios where society does not disable us but it is our environment but it transcends society's reach. So yes, I do suffer. I cannot make the birds stop tweeting, turn down the brightness of the sky or remove people around me. I cannot blame society for doing what they are doing and I cannot change my natural environment either.
Tuesday, 26 September 2017
'Autism-friendly' Northern Ireland town
My second reaction: Oooh, is this a town where meaningful workplace reasonable adjustments occur under the Disability Discrimination Act 1995 (The Equality Act 2010 doesn't apply in NI)!!
Autistic and facing redundancy
- Do a college course (yes, I know some aren't free).
- Volunteer somewhere.
- Join a club.
- Go see a friend/family member regularly to have things to do on set days.
- Do the food shopping early in the morning so there's a need to get up. Go buy some food cheap and cook something amazing.
Sunday, 21 May 2017
Symbolising disability for autistic people
Tuesday, 28 March 2017
World Autism Awareness Week: how often those spreading 'awareness' forget the high intellectually functioning adult.
Here's a link to the National Autistic Society's web pages on this: http://www.autism.org.uk/get-involved/world-autism-awareness-week.aspx
But I have a bit of a problem with it because once again I feel somewhat marginalised from what should be my "little special needs community" (or should it!?). The NAS covers lots of stuff about fundraising for them on the above linked website and I am sure they do a sterling job for those who really need support services and the like but I feel that here in the UK I fly under the radar because I am not "bad enough".
But people like me? The people with a diagnosis who can live independently, have a job, a family and been to university? Where do we turn to? I don't feel like there is much room for people like me in the NAS. I would love to hear from people who have benefited from the NAS, particularly those who are similar to me that might be able to change my somewhat jaded view. But in my case its like the title of this blog says:
"Not autistic enough; too weird to be neuro-typical."
I often feel like I am falling between the cracks as my differences and struggles can be subtle and I am able to control some of my meltdowns or at least delay them, although to the detriment of my mental health and triggering migraines. I have a significant awareness of my functioning and have identified strategies to compensate for a lot of my disadvantages. As such, I will avoid things that upset me so that I can maintain a sense of well-being. It almost is insulting to "real disabled" people to call myself disabled and yet there are so many times when I don't understand something and I am on the peripheral looking in and confused. Whilst I don't feel disabled, my autism shapes my life in such a way that the difficulties I face are long-term, substantial and neither trivial or minor. It impacts on my life choices, my confidence, what I can do in life and what I don't. Yet because I don't feel pain that is so unmanageable or problems accessing buildings and services in the way that wheelchair users might, I don't regard myself quite in the same way as those who do face that. As a result, I see myself less as disabled and more as just unfortunate and that's how life is. Few people are exempt from life's obstacles in some capacity and I don't feel that I have some special case over other people.
Yet too because I can get on with life mostly okay, although at times its hard and I constrain what I do so I can manage life reasonably well, it feels like I don't have any real needs given my ability to largely get on with it. I wonder how important it is to raise awareness of my 'plight' when there are so many people much worse off than me?!? I struggle with the notion that I should be entitled to support and yet I know there are times that I need it and I know too that a greater awareness is needed for people like myself so we don't get forgotten about, particularly in the more complex parts of life involving employment and relationships.
Its awareness weeks like these where I don't know if the NAS truly represent the intellectually high functioning adults as much as the lower functioning children that require significant social care.
And lets be totally blunt - those who are intellectually low functioning, perhaps with comorbidities too, will probably never face the stress of driving to a new place and finding somewhere to park or worrying about a job promotion. But then I have never had any problems with only requiring food that is of one texture or one colour and having to eat from my favourite bowl.
I am desperately trying not to be ableist because I understand that my experiences of autism will fit on a Venn diagram alongside those autistic people with their unique manifestations of it. Some of what I go through and those with 'mild autism' will not experience what those with care needs might but somewhere we will overlap in our experiences even if how we understand it and react to it will be different. And of course we don't all experience the same systemising or empathising styles, have the same sensory processing or how our brains focus on the small details over the wider picture therefore variations are certain.
But here's the thing - I am not sure the autism community, whoever they are and if they exist, really put enough focus on those higher functioning autistic individuals. Whilst there is a nod to employment support, it doesn't seem like it goes far enough. I don't need support to tell me that small talk can involve the weather or about how I should be using my own mug in the office (See here for an example: http://www.autism.org.uk/about/adult-life/work.aspx). And I do appreciate for some it will be extremely useful but for many of us who are graduates and have experience in the workplace, we need the kinds of help tailored to our level of academic and vocational ability and being able to potentially navigate professional level careers. Being told to turn to our university's career guidance is not good enough and often it is only available for a limited time after graduation.
Until the big autism charities devote more time to our very specific needs and not make it all about children and the autistic people who may require much more daily support and see our needs as important, how are we ever going to bring awareness to the wider world about higher functioning autistic people when the focus is on the lower functioning less able (but still very worthy) autistic people?
During World Autism Awareness Week perhaps some of the autism charities need to familiarise themselves about how wide-ranging autism is and not forget some of our autistic counterparts are lost in the sea that is filled with support geared at children, neuro-typical parents and those people requiring and receiving social care because we are just 'mildly autistic' and seem to get by.
I want my life to be more than just about getting by and falling from one crisis to the next.


