This week (21st-27th March 2022) marks ‘neurodiversity celebration week’ so I thought it would be a good week to publish a post sharing some of my thoughts about being a neurodiverse individual living in a neurotypical world.
I want to make my blog a place that celebrates autism but I also think it is really important to share the honest challenges that I and many other autistic individuals face on a daily basis so I am going to try and do that in this post as well.
I think the first thing that is really important to me to get across is
that I don’t see being autistic as me having a disability. Some people might
wonder why we would celebrate having ‘something wrong with me’. There is
nothing wrong with me, autism makes me unique which brings its unique
challenges.
I remember being told by a fellow autistic individual when I
once said this that ‘of course autism is a disability there is nothing positive
that autism adds to me’. I found this really sad to hear but I think had you
asked me 10 years ago this would have probably been my response. However Autism
doesn’t need to be all doom and gloom. Autism makes me life difficult at times
but it makes me me. Everyone has there challenges but those challenges are
matched with positives.
You could say that being short is a disadvantage for some
aspects of life (Talking on behalf of my siblings I can say they would probably
agree with this!) But if you met someone in a shop who couldn’t reach something
on a top shelf would you look down on them as if there was something wrong with
them? I hope your answer would be no, I would offer to grab what ever it was
they needed.
I don’t understand why people don’t see autism in this way.
I might need reasonable adjustments put in place to support me to reach when I
can’t but also that doesn’t mean that I can’t shop from the middle shelves with
ease. However, sadly this is often how I feel autism is viewed, the amount of
times I have been told or heard they can’t do that because he/ she is autistic.
They can do it they just need to approach it in a different way.
One resent challenge that I have faced is trying to access
advice from my GP. I have found that the system my GP use is very difficult for
me as an autistic individual. Since COVID times my GP now only offer appointments
via a system whereby you submit an online consultation form, this is then reviewed
by a clinician who will phone back within 48 hours (Apparently…). Recently I
waited 7 days before I phoned the GP to tell them that I wanted to cancel the phone
back as the unknown waiting for an appointment was causing me more anxiety than
my original question.
I explained to the GP receptionist that I was autistic and this
system did not work and as a reasonable adjustement it would be really helpful
to have a time that the GP would call me. The response from this was that
reasonable adjustments can only be agreed to by speaking with a doctor (the
thing that was for me not easily accessible!!).
I did a bit of reading on the surgeries website and found
their accessibility policy which states how they are able to support those with
sight impairments by welcoming guide dogs in the practice or need to access the
surgery via a ramp. This to me is NOT an accessibility policy. It ignores any
needs that are not visible.
At this point I decided to look at other surgeries to
register with that had more in depth accessibility policies. Thankfully I have
found a surgery that have been much more open to discussing reasonable adjustments.
This however shouldn’t feel like a big achievement to have found a practice
that are able to support me. This should be the norm. It makes me really sad
that there isn’t wider awareness of the needs of autistic individuals and it makes
it come across to me that my needs are less important than those with a
physical disability. This is not the case, the needs of autistic individuals
are no more or less important they are simply different.
Sadly I don’t think I am alone in these challenges there are
so many inequalities for autistic individuals in a predominantly neurotypical
world. This highlights this importance of campaigns such as neurodiversity
celebration week to raise the profile of autism and other neurodiverse diagnosis.
It was such a privilege to recently be able to work alongside the lovely Sophie from South London and Maudsley NHS Foundation Trust in developing a page on their website that celebrates neurodiversity (Link at the bottom), signposting staff to support, normalising the need to say I need a bit of support. It would be AMAZING to see more employers putting together recourses such as this to support their Neurodiverse workforce.
Another amazing project that I have recently had the honour
of getting involved with is the Neurodiverse Nursing Network (Link at the
bottom). I can’t take any credit for it but some of the amazing ND Nurses team
have put together a really invaluable short e-learning course (Link at the
bottom) that again celebrates and raises the profile of neurodiversity within
nursing. I would really recommend engaging with it, I know I found it really beneficial.
Hopefully this slightly rumbly post shows some of the real
life challenges that autistic individuals face day to day and the importance of
campaigns such as ‘Neurodiversity Celebration week’ to increase awareness.
Autism isn’t always easy but its me. I can’t honestly say that life would be
all plain sailing and easy with autism. In a world with so many challenges
thrown at us (Neurodiverse and Neurotypical) I wouldn’t want my world to be any
different.
I am proud to be autistic and absolutely celebrate it, so please join me in celebrating the beauty in diversity. Lets face it the world would be pretty boring with no diversity thrown in so you can thank us for that!
To Finish of I think that this image shows neurodiveristy in a way that words can describe!
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