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

(75 comments )

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

stubbornstains Sun 15-Dec-13 20:27:46

Yes, I had never entertained the possibility that I might have AS until I happened across a discussion on MN.

MrsTwgtwf Sun 15-Dec-13 13:46:14

Exactly, Mollyweasley. Raising awareness of neurodiversity would help vast numbers of MNers. - especially those who may know nothing at all about it.

Mollyweasley Sun 15-Dec-13 11:30:27

I think that the great thing about talking on Mumsnet about neurodiversity is that mumsnet is used by everybody, not just people who are interested in special needs. When I first looked into autism on the web, I was glad to find loads of useful information, however this useful information is usually only available on specialist websites. A Mumsnet campaign could be a way of making people who do not usually feel concern with special needs aware of the issues faced by people with a neurological difference. You never know they might recognise themselves or somebody else in their family.....

MrsTwgtwf Fri 13-Dec-13 23:00:10

I wonder if we could ask MNHQ for a Mumsnet Campaign on Neurodiversity.

Also the suggestion upthread that we could do with a Neurodiversity topic is a great one imo.

Mollyweasley Fri 13-Dec-13 19:42:08

Thank you for your comment peanutbutter. It had cross my mind but I didn't act upon it because I worried about the behavioural issues and whether I could handle them. But perhaps I can handle behavioural issues in the autism world much better than in the NT world, simply because I can relate. We are very lucky where I live to have a local school for children on the autism spectrum who can not achieve their best potential in mainstream schools. I think I might contact them and see if I could volunteer there. Thanks for your comment it is very helpful.

peanutcake Fri 13-Dec-13 15:43:35

Have you considered working in a special school Molly? DS goes to a specialist school for ASD and the environment is deliberately set out to avoid sensory overload. The classes are very small too. But the behaviour can be challenging initially - my DS had very challenging behaviour when he started there, but he has improved massively. I suspect that at least one member of the teaching staff is on the spectrum, although this is never disclosed to parents.

Mollyweasley Fri 13-Dec-13 14:33:16

peanutcake thanks for answering. It is so helpful to hear other people's story, but I really feel for you. I think we all need to tell our stories so people can understand better what it is to live on the autism spectrum in the hope that one day when you can't get out of bed on a bad day, people will understand and accept why.

Xmas Santa great post. I know what you mean by sometimes having too much empathy. I can actually not feel happy unless all the people around me feel happy (especially the one I love)- and by feel I mean that they can't just pretend that they are happy, I have to physically feel that they are happy. Sometimes, I seem to be able to do that physically feel what other people feel which can be difficult. I used to be unaware of it and would go from happy to stress really quickly without knowing why. I now know that it can be because I just came across somebody who was stressed.It is a bit like being an emotional chameleon.These days if I can acknowledge it, it helps me deal with it. I read that Tony Attwood mention it is not uncommon in women with Asperger Syndrome.I wish I could learn to channel and control this though it would then become a gift.

I have a right problem with finding the right career at the moment. I love being with children and I love teaching, but it is really difficult for me. I can't pick up on all the social cues and when the kids misbehave I do not stop them on time and it all escalate out of control. The other problem is that I have auditive processing issue so I often do not react to what they are telling me on time and they have to repeat what they have just said. Also a school is such an ideal environment for sensory overload! It is sad because I am qualified and love to be with the kids but t seems to trigger all my autistic buttons which would have great consequences on my personal life. I am currently looking into educational research.

stubbornstains Fri 13-Dec-13 10:02:56

That's a great post xmassanta

I do have quite a lot of empathy now, I think, but feel that I have actually consciously worked at developing it, like exercising a muscle. For example, I just didn't "get" babies as a child/ teenager, but as I have become surrounded by friends/ acquaintances with babies, I have literally made myself like them. And now I genuinely do. Fake it till you make it has definitely been the case with me....I think that if I was a man, I wouldn't have been under the same social expectation to like babies, so would still probably ignore them.

peanutcake Thu 12-Dec-13 22:32:52

There are so many myths to dispel s well: I am NOT lacking in empathy, I have way too much and it can be crippling

Actually I would say that I probably fit into that myth, I am a bit nonplussed at TV coverage of apparently distressing events and I am often confused at the need to put warnings on MN threads in case someone might get upset. I can't imagine getting upset at a thread, even though I've had experiences with sexual abuse, rape, DV, other fairly traumatic stuff, but I guess my lack of theory of mind means it's never triggering for me because I don't relate my own situation and the person in the thread. I'm not very touchy-feely at all, although I've learned to nod and make sympathetic noises, which seems to end up with me being labelled 'a good listener'!

XmasSantaA4220 Thu 12-Dec-13 21:13:02

Catmum- if you'd like to share information about that (PM is fine) I would love to hear it, it's certainly not part of anything ethical we have studied on our course and there's such thing as a purely genetic ASD that can be diagnosed that way, it HAS to be done by ICD or DSM criteria. However, there are related genetic disorders increasingly brought under the umbrella that could be passed that way I guess, I am far less knowledgeable about those.

If I were you or your DH I would wish to sit down with those genetics and a Clinical Psych before accepting the DX as certain. At the very least it is odd and you can't fulfil the proper criteria in someone''s absence, what did the Ethics material for the research study you were given have to say about it?

XmasSantaA4220 Thu 12-Dec-13 21:08:33

Excellent post, thank you.

ASD varies and the majority of people with it are unemployed, sadly. Even at the higher end of the spectrum. For lots of reasons- because it can trigger depression, make job interviews impossible.... my mum describes herself as too old to be worried about a dx now but is clearly on the spectrum and she was employed- many times: she would win awards for her work and then hit a silly hurdle and panic, giving up. By silly hurdle I mean the rota done the wrong way which just needed a query with her boss.

But it wasn't silly, to her. To her it was an impenetrable barrier.

I am not too old for a dx, and am awaiting the final process of that. I had to go to a GP, state my qualifications (I shall soon have an MA in Autism) and ask for that to be set up. Of my 4 sons 2 have a dx already, one is in assessment but in my own opinion clearly autistic, the other is not. husband is probably somewhere on the spectrum, they have found errant genes and they lead back to him. he has a very complex family history of mothers abandoning children and family feuds that means we cannot delve any further back.

As a woman, I see differences in how my AS affects me. I am an extrovert, I need people to be happy and properly function, yet I do not know how to 'do' people. I stand alone at school gates, and everywhere else I go unless husband is with me. My family are many miles away and I have learned to get by but I live in fear of husband becoming ill as we rely on each other in many ways. I am naive, and always will be. People think they have fun around me as they make snidey comments and I don't bite, they think I don't get them so it is OK- except I do get them, at 3am that night. I am a target for bullies.

Or rather I was; since knowing I am heading for a dx I have started to feel better in my own skin. I am not bad; i am just a little different. My friends are on facebook, but they are as tight as any bunch I know and I have known some for a decade now from Mumsnet. We meet sometimes, but mainly talk online, and last night at midnight when I was stressed there was someone online to chat to. That matters. It is more than what many have.

I hope as my boys age we realise how to help them maximise their potential, but it's a long way off- the LEA told me today that there is a 50-50 chance of finding ds3 a school. If there was an independent they would pay, but there's not where we are. There's an out of county, and there are 4 kids to 2 spaces: we just have to wait and see. And if we want confident adults we have to start with the kids. There are so many myths to dispel s well: I am NOT lacking in empathy, I have way too much and it can be crippling, even Comic Relief is a no-no now unless I want to be in tears for days after. I certainly don't lack emotion, and II am the opposite of a cold person- IF you get close to me.

Thank you for this blog (and sorry for this waffle)- I wish Susan and anybody going through diagnosis and adjustment luck. If it helps one person realise they are NOT bad, then it's a great thing, and that's what it is doing for me.

MMMMMaria Thu 12-Dec-13 18:13:31

Great post, and fully agree with Mme Lindor that everyone would benefit if we were all kinder and more patient with each other (starting with myself, will try to take a deep breath next time I start to get impatient).

peanutcake Thu 12-Dec-13 15:22:16

Mollyweasley it varies, but probably the most difficult thing is getting on with things. Either because of motivation, procrastination, anxiety or getting distracted by my obsessions. In the OP Amanda says something about having "someone near on darker days, when my hand shakes as I go out of the door" - well on my darker days, I don't even manage to get out of bed, let alone the door. There's very little understanding for this, because in those circumstances I'm not even in a state to call/email to say that I won't be turning up, so it's not treated like any other illness or disability where you could say you've had an acute episode and need to stay home.

DianeLSmith Wed 11-Dec-13 21:36:25

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Mollyweasley Wed 11-Dec-13 18:26:08

catmum1 ALthough your comment was interesting, I am not sure your it was directed at me.

peanutcake you seem to be having a really difficult time with AS.My mum suffered from depression, it is a very hard condition. Can I ask what is the most difficult thing in your everyday life?

payney954 Wed 11-Dec-13 17:34:10

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payney954 Wed 11-Dec-13 17:32:41

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peanutcake Wed 11-Dec-13 14:44:18

I was diagnosed with AS a few years ago. I'd been seen by professionals about my depression for years but I finally got an appointment with an autism specialist when I was sent for assessment for a personality disorder (!). The specialist said that he didn't think I showed signs of any PD but that I'd been living with undiagnosed AS for years, and it was probably the root cause of my depression and having to cope with all the difficulties of that without recognition or support.

I do feel relieved about having the diagnosis, although I recognised it in myself much earlier, as I have a DS with AS too.

I find my AS quite crippling, I haven't worked for 15 years because of it and I struggle a lot with very basic daily tasks, although I'm degree educated. A lot of the most vocal people in the autism community are much more capable of functioning than I am (e.g. hold down jobs or raise families with no additional support), yet I know quite a few women with AS through support groups/research studies who do struggle and can't simply hold it together.

I don't really feel that just a bit more kindness and understanding is enough. AS has a real disabling effect on my life and I want all the protections that are offered to the disabled, including legal rights in work and the right to DLA/ESA (luckily I have qualified for higher rate DLA and I don't have to worry about getting ESA right now because I'm a carer for DS). But I'm very concerned I won't qualify for PIP when it's time for me to be transferred to the new system, and a lot of the media coverage/campaigns about that are focused on people with more visible disabilities.

catmum1 Wed 11-Dec-13 14:40:32

ouryve:Thanks for the link, I am not keeping up with research.

catmum1 Wed 11-Dec-13 14:37:13

Molly:No, they were studied through DNA analysis, our DS had an MRI brain scan.Plus all the usual Ed Psych tests and balance/perception tests.

Mollyweasley Wed 11-Dec-13 14:30:50

thanks! I never realised we could talk about ourselves on the SN chat, always thought it was more to speak about our children!

catmum1 Wed 11-Dec-13 14:25:08

No we are in UK.

catmum1 Wed 11-Dec-13 14:23:34

Poltergoose:DS was diagnosed through a very thorough multifaceted testing by a hospital neurologist and an educational psychologist who were studying female Asperger's Syndrome. This diagnosis was because they had previously identified characteristic brain formations, with smaller masses and less connectivity in some areas and enlarged in others. She had two different sets of these formations which usually are either/or. I suspect they found both typical male and typical female formations. Since we are all Aspies we talk freely about our various afflictions in the hope of helping others. Our DS has many illnesses including PCOS and has very high male hormone levels, about half as much as a normal man.

ouryve Wed 11-Dec-13 14:19:57
ouryve Wed 11-Dec-13 14:13:53

Molly there's a general SN chat board now, which might be a good place to start a thread. There's also the advantage, that with it being chat, it would be easier to be honest without fear of your words hanging round on the internet for an eternity.

catmum - is this anything to do with the Finnish AS families study?

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