To wonder if it's worth actually getting an Asperger's diagnosis as an adult?

[ShutUpShouty]

Bit of a strange thread I admit, but I've had an inkling for years that I might have Aspergers syndrome. It's only been within the last year or so when I started to research more into it and found out how women on the spectrum present very differently to men that made me pretty sure that I do have it. Every article I've read about women with it pretty much fits me perfectly but I've never been sure whether to actually get an official diagnosis or not.

Would a diagnosis make much of a difference? It wouldn't change anything about me, I would still find the same things hard as I do now. I've heard you should only get a diagnosis if you're really struggling but if you're content then it's not worth it. Sometimes I'm okay, but then often I struggle...but again would a diagnosis change that? Then again with an official diagnosis it would hopefully make certain people who give me a hard time for my quirks and criticize me for them (these are close family members btw, including my parents), especially my difficulty in social situations back off a bit. I would be able to say "hey, it's not my fault, but I am trying"

Anyone who has had a diagnosis as an adult felt it made any difference at all? And how hard was it to get diagnosed as a female?

I don't know whether to make the first step or not.

[ICanSeeTheSun]

Well done in writing all that out.

You haven't started anything, it was the ill informed poster who have.

[ocelot41]

Sorry, I should have added that if you wish to think this through a bit more, you could call or email the National Autistic Society. They really are excellent.

And by the way, most people refer to folks as being on the autistic spectrum these days because 'disorder' makes it sound like a mental illness, which it is not. It just means your mind is 'wired' differently.

[TequilaMockingbirdy]

Thanks starlight

[MurkyMinotaur]

I was diagnosed with AS in my early 20's.

Autism is not a mental illness, because it is neither mental (of the mind) nor an illness. It is a disability based in neurology.

Many people can have autistic traits, but that's quite a lot different from really having autism (or Aspergers). When people say, 'We're all on the spectrum' it can feel as though that undermines the daily struggles, efforts and accomplishments of living with autism because it feels as though autism is being down-played and diluted. It's as though someone said, 'My legs get tired sometimes too' to someone who has a painful condition that makes it hard to walk, for example.

In answer to the OP...

I had GPs reject my requests for a referral many times. It was beyond frustrating and I almost believed I was deluded for imagining I had AS. I was fobbed off and patronised at every term. I never was referred for an assessment and after three years, I paid £500 for a private assessment at the Hoffmann Foundation in London, which was excellent. I was diagnosed with AS and was well within the autism domain, so not even mild and easy to dismiss.

The reasons I wanted a referral were:

I needed to be able to explain my differences to employers.

I was being misdiagnosed with mental health conditions I didn't have.

I wanted to understand myself and give myself 'permission' to be me, whilst still making an effort and trying my best.

In reference to the AQ test. IMO that's a really poor test. By all means have a go, but it doesn't do justice to the complexities of autism/AS.

You may like a book called, 'Aspergirls' by Rudy Simone, which describes being a female with AS.

[ocelot41]

Might I also ask OP do you have any DC?

If so, do you have any thoughts about how this might have been affecting them?

This is not meant to imply that you are any kind of bad parent by the way. Just if you are considering what the outcome of diagnosis might be and subsequent support etc, that could be important.

Speaking from experience, it can be heartbreaking to be raised by someone who does love you but who you never feel loved by, because they don't like to hug or touch.

[NinjaLeprechaun]

ocelot it's probably easier for children to know that Mummy or Daddy can't help the way they are, and it's not because of them.
I have bipolar, and my daughter knew from a fairly early age (considering she was 5 when I was finally diagnosed) that my brain was 'broken' and so I couldn't always do things the same way everybody else did them. I like to think that made it easier for her, because she didn't have to wonder why she had such a weird mom.
Of course, she would 'win' any argument we had by saying "well, your brain is broken, that's why you think that".

[LRB978]

OP

I was diagnosed about 2 years ago now, so at the age of 33. It really helped me, because it confirmed that there is actually a reason for me feeling/acting the way I do, and also by understanding the reason it has helped me devise ways to help me cope with my issues. It also gave me permission to work around things I can find difficult, like looking people in the eyes, I now hold it for the few seconds I feel comfortable with before looking elsewhere on their face, and then going back to their eyes. Before I felt like I had to look at them straight on because that was the social expectation. However, it did not/has not/does not help with many people around me who do not have any real understanding of the condition, I'm still seen as being awkward/annoying/irresponsible or whatever else their perception is.

Depending on where you are in the country will depend on how easy it is to get a diagnosis, and what support there is for you afterwards. If you are in/around Shropshire, please let me know, either on the board or via private message as there is a fantastic woman here who does a lot for helping people get the diagnosis, and has set up a social group for us to attend (diagnosed or not, and we are all on the autistic spectrum somewhere, so lots of understanding) which provides support as well.

[CrabbyBlossomBottom]

AElf What an absolute load of fucking nonsense you're spouting! Did you really work in a school for children with ASD?

OP yes your description certainly does fit with how AS presents in females. I have a daughter with AS and since reading more about it have realised how many traits I have. I would like a diagnosis as it would make sense of a lot of things and mean that maybe I would stop beating myself up for the things I struggle with that others seem to find easy. I don't know whether it's worth going through the referral process though, or even how to go about it.

[ocelot41]

Ninja you are absolutely right that a diagnosis helps with that. Otherwise DC are apt to read this as being their fault, that they are somehow unlovable.

Let's face it this parenting malarkey demands a lot of us. We need to be flexible, endlessly interruptible, patient, empathetic, affectionate, able to withstand large amounts of mess (often of the sticky gooey variety), physical pawing, noise and emotional need - often when functioning on very little sleep and/or with a conflicting set of sibling or work demands going on too!

There may be all sorts of reasons why that may be extra difficult for someone. But AS can be a very a significant problem in parenting precisely because it can make so many of those things super SUPER hard all at the same time.


Unfortunately, those difficulties can impact very negatively on DC - see research done by Maxine Easton for example. So I think support and the development of coping strategies needs to be a family-wide thing to be effective.

[AGnu]

Starlight that's a good idea, thanks. Is it normal for people to give doctors letters to read outside of actual appointments? It seems wrong to not book an allotted time. DH rang them to cancel the appointment because I can't use phones without feeling panicky & my mind going blank & did ask for a message to be passed on but our surgery really isn't the best so it wouldn't surprise me if nothing was communicated to the doctor. I might follow it up with a letter. She did tell me the appointment was so I could "state my case" so I do feel a little justified in sending her the reams of information I've gathered & the numerous lists I have detailing exactly how I think Aspergers & PDA affect me!

[AGnu]

I love that there seem to be a greater proportion of MNers with ASDs than in the general population, as far as diagnoses go when it comes to ASDs. It strikes me that those who struggle with face-to-face interaction may well be more likely to conduct their social lives online. This way it's anonymous, entirely on your own terms & you can always name-change & start from scratch if you begin to feel like people think you're weird!

Isn't there something about boys with Aspergers being 'professors' & girls being 'philosophers'? I'm definitely the latter!

[GarlicMayHaveNamechanged]

www.psychologytoday.com/blog/the-imprinted-brain/201311/dna-duplication-autism-schizophrenia-what-we-predicted

However, Williams syndrome is often called "the opposite of autism" although technically (simplifying!) it is autism. There's a bit in the above article about it.

More of a psychological take on the same theory: www.psychologytoday.com/blog/the-imprinted-brain/201011/paying-the-price-sanity-mental-illness-in-humane-light

Older article from 2009: www.newscientist.com/article/dn18226-autism-and-schizophrenia-could-be-genetic-opposites.html

Comparative genomics of autism and schizophrenia, the 2009 paper.

That work has been continued. One of many reports (2014): www.medicalnewstoday.com/articles/276081.php

Sorry for the diversion, Shouty. It's just that our autists like to have sufficient data about new ideas

[PrincessBabyCat]

hen again with an official diagnosis it would hopefully make certain people who give me a hard time for my quirks and criticize me for them (these are close family members btw, including my parents), especially my difficulty in social situations back off a bit.

This has nothing to do with a diagnosis and everything to do with respect.

If they haven't learned to accept you how you are and understand you fumble during social situations sometimes, a diagnosis isn't going to change that. It's very possible that they'll just continue their behavior then insist you don't really have Aspergers.

A diagnosis should be meant to help you understand yourself and get the help you need. It can be used to help people have a better understanding of you, but don't expect them to say "Oh! You have aspergers, I'll back off". I finally got diagnosed with some LDs as an adult so I could get help with college and the like, and my parents were just like "You don't have a LD, you're just bad at math because you don't practice enough".

I have an easy time brushing it off for the same reason I'd laugh if someone told me I only had a cold if the doctor said I had the flu. You may have to adopt the same attitude if you do get this diagnosis and they brush it off. Just a fair warning. I do sincerely hope they don't, it's just a heads up that families are generally stupid about these sorts of things.

[ProudAS]

I was diagnosed at 30 and it saved my job and marriage.

[Slutbucket]

To me an experienced layperson on the subject you could possibly have aspergers. There is nothing to stop you speaking to the doctor and the autistic society and make your decision from there.

[ocelot41]

I am sorry you found your family so unsupportive Princess. But I have to say, our family has responded very differently. It has really helped us to understand that certain ways of behaving are not about being controlling, self-absorbed or cruel, but are the consequences of someone we love getting stressed because they are struggling to cope with social situations.

[DaVinciNight]

I agree with Princess. My experience has been more what she had that a supportive one. Of course, it depends a lot on the person herself.

I also agree with posters who say that it can their marriage/relationship. However, DH has never wanted to get a diagnosis as he only sees that it would confirm 'he is weird' (his words).

But knowing that he is probably on the spectrum has been enough to make a difference. It allowed me to make changes. It also allowed him to acknowledge that he has indeed some specific issues that need to be addressed.

It depends a lot on how people around you are re disability and autism. My parents are still with the idea that an autistic child is someone who doesn't talk and sits in a corner rocking. So they don't want to accept dc2 is on the spectrum, let alone the fact DH might be too.

[Hereward1332]

An adult diagnosis is not going to hurt. If disclosed to an employer they have an obligation to make allowances for it. I write as someone who has lost a job through what I now believe was undiagnosed aspergers. The most important thing is that you recognise its symptoms and can plan accordingly, whether or not it is diagnosed.

[dawndonnaagain]

By contrast, duplication of the same region is associated with spared visuo-spatial skills but severe language impairment, ASD, and seizures (which are commonly associated with ASD).
This would be some of my problem with this research.

[Psycobabble]

It's been suggested a lot through my life I could have ADHD and as an adult I do have a lot of the symptoms it does effect my life but iv not had a diagnosis . 2 psychologists is a for diff reasons both agreed n said I should go to gp if I want to get a definite diagnosis so know exactly where your coming from !

I to feel like well what will it change ?? But also be nice to have an answer to why I have these quirks lol I'm not unhappy though so for now I'm leaving it

Good luck with what u decide to do x

[Soapysuds64]

OP, you sound like my 12 year old daughter - touching, obsessions, limited diet, lack of empathy and precision (especially with time) are her things. She has had her first visit to an educational psychologist and is awaiting follow-up. I think it is helping her to understand the way she is, so I would go for it. From what you describe, it sounds like you would be taken seriously.

[aluvss]

ShutUpShouty the things you have listed is exactly how I am except for the clapping, but the no touching thing I thought was coming from issues from when I was younger did not relate this to AS. I have always thought I might have Aspergers in a way but Im okay as I am so havent done anything about it.

Does anyone have any links for tests online for AS?

[TillyTellTale]

AElfgifu
Thinking you have Asperger's after researching it actually makes it likely that you are completely NT!

Are you under the impression that people with Asperger's cannot have self-awareness or any ability to analyse, or something?

[BumpAndGrind]

If they haven't learned to accept you how you are and understand you fumble during social situations sometimes, a diagnosis isn't going to change that. It's very possible that they'll just continue their behavior then insist you don't really have Aspergers.

^ this

I sought a DX so I could say to my toxic mother 'look - this is why I am like that' but that didn't happen. She denied there was anything wrong. That hurt.

[MurkyMinotaur]

aluvss There is the AQ test which you'll easily find with a web search. It does its rounds on facebook now and then too.

But I'm dubious about it. An actual diagnostic assessment takes hours and includes a complete developmental history. One of the questions in the AQ test is something like, 'Would you rather go to a library or a party?' So, use it with awareness of what it is (or isn't).