Susan Boyle and me: adults with Asperger's in a spinning world

[KateMumsnet]

When I first heard that Susan Boyle had been diagnosed with Asperger's, I had to stop and remember that this was something new, that she hadn't been an aspie before. To me, she has always been 'one of us', in her way of speaking and presenting herself, her difficulties with the world and her unique talent. The public Susan seems very much like the private one would be and this is the first place we stumble: the public aspie is only what we have learnt to show the world, no matter how honest and direct we might be in all things.

In many ways, being an adult aspie is like being a ping-pong ball in a tennis court. You know you have the shape about right; you know you have to be batted about by life and bounce back; but somehow you don't quite fit. You get thwacked with a racket and find yourself shooting out of range, lying in the corner with the dead leaves and a lost shoe while the proper tennis balls whizz about, making it look easy.

Being an adult aspie can be a very lonely, isolating experience, especially as a woman. Women in general are good at holding things together; they manage their lives and the lives of their families, they do jobs, school runs, care for relatives and make everything all right in time for tea.

All of us have extra stresses which make life complicated and I would never want to diminish what other people have to go through. It's just I know I speak for many other aspies - men and women - when I say that managing life is hard enough without any of these normal stresses, let alone the extra ones that life occasionally throws at us all.

On a good day, I could run this country or figure out a cool and exciting way to populate Mars; on a bad day I can't open the door to the postman without feeling like sandpaper is being rubbed across my psyche.

Getting a diagnosis of Asperger's can be a very important first step in understanding why you feel the way you do; it can be the vital push you need to help yourself cope with life and become the person you always wanted to be. Fulfilling your potential begins with knowing where to start looking for yourself.

Sometimes, what we all need is information which tells us it's okay, it's all right, we were meant to be this way. We need permission to love ourselves, to see in our quirks and eccentricities the kind of light other people have always seen in us.

In her interview, Susan Boyle says "I think people will treat me better because they will have a much greater understanding of who I am and why I do the things I do." This is what she hopes will change. She does not want to change herself, and thinks the diagnosis will not change her life - she simply wants other people to treat her better.

I hope she gets what she wants, I really do, but in my experience people see the adult first and the Asperger's often somewhere else down the line. We are fully grown, we are expected to behave like we know what we are doing. And often we do!

How awkward we are, looking like adults and usually acting like them, only to go on and have a meltdown in the middle of Tesco because that old woman pushed past me again and hit my bag and the lights are too bright, the self-service tills are making too much noise and where on earth was I meant to be going after this?!

What adults with Asperger's need, above all things, is just what Susan says she needs - other people to be kinder and more understanding, so that we feel safe to break down and then be picked up again. For all the days when I have the sun shining on my face, I would give an awful lot to have someone near on darker days, when my hand shakes as I go out of the door.

We can learn to work with our Asperger's, and grow as people - but might always have that sensation of being spun away from everyone else. We need to feel that even as we are spinning and the world is flying out in every direction, we will come to rest and be able to stand up, dust ourselves down and try again. And that someone will be waiting nearby, to make it a little softer and a little kinder while we live our glorious lives.

[IamMrsJones]

You have worded this perfectly.

I have had the worst year ever this year and on one hand, I feel as though Aspergers has kept me 'plodding through it' and helps me to bounce back, on the other hand I feel so overwhelmed, like I'm having to make decisions too quickly, before I have a chance to think properly in quiet like us Aspies need.

[IamMrsJones]

Sorry, that makes no sense

[peekyboo]

No, it does make sense because that part of aspergers which keeps us on the outside of life can actually help when things get bad. It becomes a kind of disconnect, or a barrier between us and the rest of it.

Amanda

[threepiecesuite]

I don't know an awful lot about Aspergers but I really enjoyed Amanda's blog post, she writes beautifully, and it gave me much more of an understanding. I particularly liked the ping-ping ball/tennis court analogy.

[LaLaLeni]

If it helps at all, I, and many others, are making it a priority to raise awareness and change attitudes in 2014. I strongly believe in Neurodiversity (I.e. That ASD and specific learning difficulties etc are all NORMAL variants of human cognition) and I hope that eventually the 'Neurotypical' will see how a diversity of human minds can be a brilliant thing!

[peekyboo]

Thanks threepiecesuite!

Amanda

[peekyboo]

Thanks threepiecesuite!

Amanda

[IamMrsJones]

Peekyboo, that's it exactly. I have been so grateful for that disconnect, it has definitely helped me to keep going. Everything has been like a 'task' I have to do and then move on to the next one. The mind is a wonderful thing!

[PacificDogwood]

Thanks for that blog post, peekyboo.

Sadly, where I live there is NO provision for adults on the spectrum, certainly not on the NHS.
I have no idea how to go about advising somebody who is as yet undiagnosed but who is looking for further assessment and a possible diagnosis if they are no longer children.

Do you have any advice?

[ArtisanLentilWeaver]

Many thanks for an excellent posting, Amanda.

May I echo PacificDogwood and ask how you go about getting a proper diagnosis as an adult?

[peekyboo]

So much depends on your doctor, unfortunately. But I have heard some people say that they found it easier to get a diagnosis when they made it clear they wanted the diagnosis itself rather than any support! This should not make a difference but I guess it might in these cash-strapped times?

[peekyboo]

And if one doctor doesn't listen, go to another,but don't be afraid to take someone with you who can help you keep on track and support what you have to say.

[MmeLindor]

Lovely post, Amanda.

We could all do with a little bit more kindness and empathy, and perhaps this gentle reminder that a person may well be struggling with an unseen issue, will make people stop and think before they act.

[peekyboo]

Thanks MmeLindor and yes, there are many unseen issues which affect people so it's better to assume someone might need more understanding than decide they are just being difficult.

[JakeBullet]

Fabulous blog post.

I think what resonates for me with Susan Boyle is that she had to go and find the truth for herself. Misdiagnosed all these years because nobody thought to investigate and in the end she had to pay privately. Okay so I know that she can well afford this now but there were many years when she couldn't.

I know I am on the spectrum but because I have achieved and in my GP's words "achieved well" nobody wants to look an further. My son is autistic and according to my Mum not dissimilar to me as a child......he also has ADHD (I suspect the non hyperactive version in myself) and dyspraxia (the one diagnosis I have).

I don't seek support services, I just want to understand myself and why I have such a long history of depression.

Excellent blog post....I long suspected Susan was on the spectrum and I am glad it has been confirmed for her. I hope her future is brighter and happier as a result of this.

[ILoveAFullFridge]

It is incredibly reassuring to read other about Aspergian adults' experiences, because it normalises mine. While its acceptable for a child to be overwhelmed by a busy, bright, environment from time to time, or to have a bad day because they are over-tired, these things aren't acceptable for an adult. Therefore such behaviours are childish/wrong/pathetic.

With this sort of black and white thinking in a world of subtle shading, it's no wonder so many Asperhian adults are clinically depressed.

At least knowing that this is what it is like to have Aspergers helps me to understand that I am not childish/wrong/pathetic, but just a different normal. I'm allowed to feel this way.

[PacificDogwood]

peekyboo, I am a dr and have no access to any services for adults who may be on the spectrum.
I was hoping you'd have superior knowledge about services, but I suppose if they don't exist, then they don't .

And that this thread attracted posts that were deleted

[ouryve]

on a bad day I can't open the door to the postman without feeling like sandpaper is being rubbed across my psyche.

This is a wonderful way of describing it.

Like Poltergoose, I've come to understand myself a lot more since both of the boys were diagnosed with ASD. On the surface, I've made a sort of success of life and I'm articulate. In reality, I'm probably unemployable (compounded by 10 years as a carer). I can't take DS1 into Tesco and I understand exactly why. As a sensory environment, walking round the place is like receiving constant blows to the head. By the time my trolley is half full, i want to snap and I spend the rest of the day in physical pain. I can take the boys to their appointments and perform well, then spend the rest of the day in dire need of quiet solitude, so I can unfurl again. It's draining.

My biggest issue is the inertia. Sometimes, moving from one thing to the next is like stepping through a thick rubber membrane. I often fall asleep on the sofa, rather than do the sensible thing and take myself to bed. Then there's other days when I can stick at nothing.

[ocelot41]

Thanks for sharing - I really appreciate it. I have a parent who has been diagnosed with ASD. As their diagnosis came very late in life it has been hard for them to integrate it within their self image and to discuss what life is like for them as a consequence. So your post is really valuable in giving me the kinds of insight that it is almost impossible for my parent to articulate.

It is heartbreaking how few services there are for adult aspies and their families trying to come to terms with a diagnosis and find better coping strategies to deal with difficult issues and situations.

It isn't easy when it is your parent having a total melt-down in the supermarket - but it is so much easier now I am not a kid myself and understand what is going on!

[PacificDogwood]

Oh, I see - thanks, PolterGoose - there have been rather a lot of these lately

Any of you adult Aspies on here, how were you diagnosed, and at what age?
Or do you just recognise traits in yourself as you have children on the spectrum and have been educated via their road to diagnosis??

[ILoveAFullFridge]

My biggest issue is the inertia. Sometimes, moving from one thing to the next is like stepping through a thick rubber membrane. I often fall asleep on the sofa, rather than do the sensible thing and take myself to bed. Then there's other days when I can stick at nothing.

Is this Aspergers, or is it depression?