Diagnosis is a topic that pretty much everyone on the
spectrum has at some stage been affected by. Perhaps you were diagnosed as a
child or as an adult, perhaps you have no formal diagnosis and feel it is something
that you don't need or you want a diagnosis but really don't know what to
expect from it.
This week I wanted to have a look at the topic of diagnoses
in the form of a question and answer session.
Before I get started I just want to note that here in the UK the services
offered vary wildly depending on where you live, my answers are based on my
experiences alone. I'd love to hear your story, especially if you live in a
different area or country. Feel free to add your views to the comments section.
How old were you when
you were diagnosed with asperger's?
I've actually been diagnosed officially twice, so I've got
two answers to this. The first diagnosis was when I was 16, or to be precise on
my 16th Birthday. I was leaving full time school and it was clear to me that
there was something going on for me that really needed addressing. I had
terrible problems during my teenage years and the wishy-washy explanations I'd
been given just didn't make sense to me. Finding myself on the brink of
starting my adult life in such a vulnerable position spurred us into getting me
a conclusive diagnosis. 12 years later I received a second diagnosis that
matched the first. I had hit some difficulties at work and my line manager was
refusing to accept that I was on the spectrum. She had dismissed the first
diagnosis claiming that autism is a childhood thing (suggesting that I had
grown out of it if it was even there to start with) and that I clearly didn't
have it (she truly believed that those on the spectrum can't talk). Getting the
re-diagnosis not only helped secure some adjustments to the working environment
for me but also helped me re-confirm things for myself.
Why did you not get
diagnosed as a child?
Diagnosis in childhood becoming far more common these days,
but back in the early 80s when I arrived into this world it was fairly rare. In
the years since far more research and knowledge is available allowing for much
earlier diagnosis. For me the signs were missed and it was all the more
autistic traits I displayed as a child were put down to things such as bad
parenting / premature birth / bad behaviour / food additives etc, as I got
older this moved onto almost random guesses at 'your son might have..... ADHD?
/ bereavement issues / ADD? etc' but at no point was any diagnosis offered. When
an actual diagnosis was brought up it was generally considered that it
shouldn't be offered as I might use it as a label to hide behind.
What did the
diagnosis involve?
A series of tests are carried out ranging from a full IQ
test to manual dexterity and problem solving tasks. There was an extensive
series of questions relating to how I feel about various scenarios and a fairly
long and invasive questionnaire relating to my behaviours and development as a
child. The questions can feel quite intrusive and intimidating so I recommend
taking time over the questions and asking someone close to help you out if you
find you're struggling with them.
Following this diagnosis more in-depth testing and therapies
often get offered. I've had follow up tests to manage the sensory processing
aspect of autism, sensory integration therapy and various therapies to address
meltdown management and social skills.
The National Autistic Society has a very comprensive guide on how to request and what to expect from an adult diagnosis for those in the UK at this
link: http://www.autism.org.uk/about-autism/all-about-diagnosis/diagnosis-information-for-adults/how-do-i-get-a-diagnosis.aspx
I've not included any links to information about diagnoses in
other countries or for children as I don't want to give you bad information as
I don't know those areas very well myself - I welcome you to add any
information you have that may be of use to others in the comments for others to
see.
How did you feel about
the diagnosis?
When I first received the diagnosis I was a bit
shell-shocked. I remember having a typical teenage strop and telling my parents
that it was a really crap 16th birthday present! I was given a list of things
that I wouldn't be able to do because of the condition and really nothing
positive was presented to me. Once the shock had passed it turned to relief.
For a long time I had known there was something different about the way I was
experiencing the world but having a reason why meant I could stop blaming
myself and start to live my life, and I wanted to prove those who said I would
never achieve anything wrong, I had mission!
What benefits has the
diagnosis provided you?
There are two main benefits I have found from having an
official diagnosis.
The first is a personal one. Having a piece of paper in my
hand that conclusively proves that the struggles I've had are real and not just
a weakness of character really helps me to overcome the pain of times things
are bad. The diagnosis also provides me with a really useful tool to use to
seek help, understanding why and how I'm struggling really gives me the key to
figuring out what the solutions are.
The second benefit I have found is a purely practical one.
By having a diagnosis I am officially classed in the UK as having a disability which
automatically provides certain levels protection and support. It also opens up
doors to getting specialist services, home support, treatments, advocacy etc,
that are only offered to those with a diagnosis.
What disadvantages
has the diagnosis given you?
None. I'm not saying this jokingly either, there really
haven't been any disadvantages as such. The only negatives I could scrape from
the barrel are that the process of actually getting one is frustrating and
lengthy. Since getting the diagnosis it's only ever been beneficial for me.
The concern posed to me before my diagnosis was that it
could be a label I could use to hide behind. In my experience it seems to
actually work in reverse and having the label gives me more power and control
over the struggles. To be fair if I was going to hide behind a label then I'm
sure I would have found something to hide behind anyway and the effort in
fighting for diagnosis would have been too much of an effort!
I've also heard often the concern that having a diagnose
might disadvantage you if someone is prejudiced against those on the spectrum.
In reality if you encounter small minded people like this then having the
diagnosis legally protects you, actually in this situation not having the
diagnosis would be the disadvantage. If I ever feel self-conscious or wary
about disclosing my diagnosis then it's perfectly OK just to keep quiet and not
tell anyone, having a diagnosis doesn't mean that I have to declare myself as
an aspie to everyone I meet (although having a blog kinda does that for me!).
I suspect I am on the
spectrum, would you suggest I get a diagnosis?
For me having a diagnosis has been a very positive thing but
that doesn't mean I will be insisting everybody rushes to their doctors
tomorrow for a test. There has been clear advantages for me in getting support
as I often struggle but the process of diagnosis is frustrating and intrusive.
I'd recommend assessing yourself if you feel a diagnosis is right for your own
personal situation. I attend a support group in my local area that attracts
many people both with diagnosis, self diagnosed and those just finding about
the condition for themselves or someone they know. If you have questions about
diagnosis groups like this and online support groups are a great way to chat
things through with people who have gone through the process themselves. It's
good to get a variety of views on the subject to help you make your own
decisions.
I hope you've found this weeks topic interesting. As always
I welcome your feedback and views. Please feel free to send me in your comments
and questions below.
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