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KateMumsnet (MNHQ) Mon 09-Dec-13 17:03:41

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

In an interview published this weekend, singer Susan Boyle revealed that she has recently been diagnosed with Asperger's Syndrome.

Here, Mumsnet blogger Amanda Harrington, who also has Aspergers', describes living in a world which can sometimes feel puzzling and unkind. Read the blog, and tell us what you think on the thread below.

Amanda Harrington

Crazy Girl in an Aspie World

Posted on: Mon 09-Dec-13 17:03:41


Lead photo

Susan Boyle revealed she's been diagnosed with Asperger's, saying she hopes that people will now "have a greater understanding" of who she is

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.

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.

By Amanda Harrington

Twitter: @thewishatree

ILoveAFullFridge Tue 10-Dec-13 16:21:12

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?

ocelot41 Tue 10-Dec-13 16:38:15

My parent was diagnosed in his/her early 70s. The diagnosis helped the rest of the family a lot (which was on the verge of a serious rift over his/her rages, need for control over social situations, criticism of others and very high levels of anxiety.

There are children in our extended family with ASD but none who behaves in quite the same kind of way or with the same intensity. All are susceptible to sensory overload but all were diagnosed quite young and have had play therapy etc since- so they started accepting Aspie-dom as part of who they were -like have brown eyes, blonde hair etc - very young, as well as starting to develop coping mechanisms.

Unfortunately, my parent has found being diagnosed a very painful experience - the diagnosis came too late to be properly integrated into his/her sense of herself/himself. S/he also perhaps pursued it for the wrong reason - to prove that the person who had suggested it as a possible explanation was wrong and 'deluded'. So finding out that actually, yes, s/he is on the spectrum felt like quite a blow rather than a relief and a source of self-understanding.

But as I said, it has improved our family life immeasurably as we've all just quietly learned more about ASD, put in place more structure, quiet 'break out' space etc in family gatherings - oh and learned not to take things personally!

PacificDogwood Tue 10-Dec-13 16:40:51

ocelot, thanks for that.
Gosh, you as a family had to wait a long time for an explanation of your parent's behaviour issues.
Can I ask did you have to seek expert advice privately?
If there is anywhere you could share, would you PM me please?

Right, I'll now stop derailing the thread smile

ocelot41 Tue 10-Dec-13 16:43:17

No problem Pacific- gonna have to be later though. I have DC to collect and tea to cook! smile

PacificDogwood Tue 10-Dec-13 16:45:01

No rush at all. Thank you thanks

ocelot41 Tue 10-Dec-13 16:45:43

Just before I run though - try checking out the Autism World magazine - lots of adult aspies there and a very vibrant i-pad based community. No, I don't work for them!

DevonCiderPunk Tue 10-Dec-13 18:47:52

Nice one KateMumsnet

2posh2pitch Tue 10-Dec-13 21:26:04

I think my daughter has a very low strain of aspergers. She is very intelligent and she has always been different, maybe even a bit odd. I have taken her to the doctors for the past 3 years and they just say she is different. Well isnt that what aspergers is. Being different from the norm. she will be 9 in Jan, all i want is for her to be slightly treated differently at school. She handles things very differently and finds it hard to cope emotionally with the smallest thing. Anyone else out there in the same situation. Bless my Ella.....

PacifistDingDong Tue 10-Dec-13 21:51:43

2posh, no GP is able to diagnose anybody on the AS - you need a specialist assessment, usually by several professionals including Educational Pychology and CAMHS.
Go back to your dr if you have ongoing concerns and ask for her to be referred to a specialist service - waiting times to be seen can be very long.

ILoveAFullFridge Tue 10-Dec-13 22:07:46

"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 keep coming back to this. So naive. So sad

ouryve Tue 10-Dec-13 22:57:35

ILove - not depression. I'm a strangely level sort of person. Sometimes grumpy, sometimes appearing to be rather severe, but mostly calm in a very zen way. People who meet me, might not have the word for it, but the word they're looking for is inscrutible. I have one or two hormonal or event related low days a month and a few extreme anxiety days a month, which are the ones that put me in a rubber bubble, as I get stuck on things (had one last week, about the weather) but on the whole, I'm fairly level and tend to be able to rally the troops, as it were (in the form of two boys with moderate-severe ASD and a DH with plenty of strong traits of his own).

I'm probably odd in being one of the few parents of children with ASD not on antidepressants for depression (I take the smallest possible dose of Amitriptyline to help me sleep through the pain due to hypermobility syndrome)

IamHuman Tue 10-Dec-13 23:03:02

Hiya Amanda,
Splendid post, girl! You've put it so beautifully and succinctly, yet managed to inject your trademark sense of understanding! I heard a quote at a SEN Parents' Conference, last year, which sums it up for me!
"If you want to know how well a new shoe fits, you don't just ask the one buying it and definitely not the one selling it- you ask the one who's going to be wearing it!!" SN diagnosis is like that- much as parents n carers think they know about the child/young person/adult's difficulties, needs and tribulations, it is, ultimately, the person themselves who knows themselves best... Your post reinforced by belief in this fact. XX

IamHuman Tue 10-Dec-13 23:03:36

- ruchita

Halo1966 Wed 11-Dec-13 00:39:18

pls forward this to Will Young. thanks
Over 47 years ago, my Mum Suffered until her death, of the same complex things as Us.
Last Wednesday, it started for Me.
Patrick Stephen Sparrow

Halo1966 Wed 11-Dec-13 00:42:21

Just realised that todays date is the date me and my Partner Mike, was the date we wanted to marry, if the word Marriage had been sorted for us to use by then.
My Birthday 13th. off to Timo in Leicester 7pm. starvin. xx

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TheLeastAccomplishedBennetGirl Wed 11-Dec-13 08:53:57

Hi Amanda

I love your analogy of the ball on the squash court, and know my adult DS (who is in the middle of his own assessments right now) identifies with that.

To take that insight further, if he is 'used' in the wrong setting, it takes him far longer to retain his normal 'bounce'.

He has been job he loves, is a very competent parent and partner, but there have recently been huge changes at his place of work (merger with other company) and this has unsettled him enormously. He's signed off sick due to stress, hardly sleeps and spends much of his day either on the edge of or in tears. His employer won't talk to him about any adjustments he is entitled to as is his right, until he has official diagnosis. He has interpreted this as 'I'm not allowed to talk about it',which then gives his anxiety further impetus.

To the poster who asked about adult services, we do have those in our area, and we've had a good experience so far. The main problem is they are too few and waiting lists are too long.

stubbornstains Wed 11-Dec-13 10:09:18

Some useful observations on here....I have found people flagging up the Aspie tendency to get over tired and stressed particularly useful.

I strongly suspect I have AS- but like many adults have never had a formal diagnosis- and one of the things I'm always beating myself up about is my lack of stamina, and the way that stress can knock me out.

I'm self employed and have a big job to finish before Christmas- DS was due to go to a childminder for 4 full days next week- she's messing me around and says she can only do half days now. The result will probably be that I'll have to work several evenings, which will exhaust me and throw me off balance for days, if not weeks.

I keep on thinking that I must be a bit soft- other S/E people-even the ones who are also lone parents- have the odd busy period where they work later into the night and it doesn't affect them too badly- but maybe this is just another aspect of Asperger's- that we need more time to rest and rewind?

ILoveAFullFridge Wed 11-Dec-13 10:19:10

ouryve. It was quite a shock reading about your inertia. Yet again, something that I thought was uniquely mine, uniquely my problem, my defect, turns out to be a normal part of someone else's Aspergian life.

I have always thought of the inertia as being a sort of learned helplessness, associated with my constant depression, developed through trying to live as a square peg in a round world (or a foot in an ill-fitting shoe!)

devilinside Wed 11-Dec-13 10:57:25

I have days of complete inertia, followed by days of the opposite, when I'm brave enough to post on Mumsnet!

Mollyweasley Wed 11-Dec-13 12:44:14

I was diagnosed 6 months ago with Aspergers syndrome and ADD. The diagnosis came after my DS was privately diagnosed - I started reading on Aspergers and it quickly became a strong interest. I read about women and Aspergers and recognised myself. I was diagnosed by the same psychologist who diagnosed my son.
I know that the Autism Research Centre in Cambridge take referral from GP and are keen to diagnosed adults (I think it is free). A history of depression and a child with autism should definitely count for referral.

I am so grateful to anybody who contributes to the awareness of Autism Spectrum Disorder. So I would like to thank all of you who do so lalaleni, Amanda and Susan Boyle. I am very keen to take part in raising awareness, however it is very difficult for me to disclose my condition publicly and I grow very frustrated! lalaleni may I ask what you are doing to raise awareness?

Also mumsnet, It would be great if we could have a corner of the special needs mumsnet board for ASD/neurologially different parent (diagnosed or self-diagnosed including ASD, ADD, dyslexia, dysprexia...) so we can share our supermarket meltdown stories. There is a parent with disability page but I think that some of us might not consider that we have a disability but rather a difference.

catmum1 Wed 11-Dec-13 13:38:32

I just joined Mumsnet after reading this blog to highlight a different problem. My husband and I are both Asperger's, were diagnosed in our absence by a hospital research unit finding that one of our DS has 2 forms of Asperger's. Had to be inherited from both parents.
When we married, the joke told by families and friends was that we saved two other people from the hassle of being married to each of us! We do argue a lot over what neurotypes consider trivial matters. My concern is that there appears to be no provision for advice to us on how to cope with our relationship or even anywhere to offer our experiences to help others or give insight into how we live.

PolterGoose Wed 11-Dec-13 13:48:09

Message withdrawn at poster's request.

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