World Autism Awareness Week: how often those spreading 'awareness' forget the high intellectually functioning adult.

So its apparently it is World Autism Awareness Week this week.

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.