I was diagnosed autistic as an adult. AMA

[Megmargs]

I find there can be lots of misconceptions and misunderstandings about autism, so please ask me anything! You won’t offend me!

@Nat6999

I'm the same, was diagnosed last year age 53, had struggled all my life with friendships, communicating, relationships, was bullied at school, didn't do as well as I could have done in exams etc & have had mental health problems ever since I was a teenager.

We are living with my mum as I have been very ill & she still doesn't understand how much I struggle due to autism, how tiring I find simple things like having a conversation & why I often disappear to my room because I get so frustrated with her & don't want to end up having a meltdown because I don't want her to see how bad i am when I have one, I have ended up banging my head against a concrete wall & punching myself in the face before now in the middle of a meltdown & I don't want things to escalate that far again so I take myself off to calm down.

I completely understand. Some days I wonder if living back with my parents would help, but I currently see them once a week (support bubble) and I’ve just had to say I can’t continue because I burst into tears as soon as I leave. We barely even talk because they understand it uses up a lot of energy, yet still just being around people is so exhausting during the school term. It’s not even any better at the weekend, I just want to cry the whole time if I’m not alone. It’s so frustrating because my world is just getting smaller and smaller but I have no option, I’m trying to just keep going. Do you have any stims that could help to try and regulate before meltdown? During meltdowns, after my diagnosis, I tried rocking back and forth and I’ve found that’s the quickest way to soothe once it gets to that stage. I know meltdowns usually can’t be avoided but could a “sensory diet” be beneficial even when you think you don’t need it? I’ve just realised I’ve gone into problem solving mode and I know that’s not helpful!! Feel free to ignore, just wanted to say I understand the struggle!

@BornOnThe4thJuly

Do you have any general advice on how I can support my 6 year old, who has just been diagnosed. I’m sorry you’re finding life difficult still and I hope things improve for you when we’re out of this pandemic.

Thank you, but honestly the pandemic hasn’t really affected me that much. I didn’t do anything outside of work anyway, my main issue with it (aside from the obvious) is just more illogical procedures at work which contradict each other! I doubt I have enough energy to leave my current workplace even if the pandemic wasn’t a thing.

General advice is hard to give, autism really is a huge spectrum. I am happy to talk about things in more detail if you want to message me to keep things private? I would say the best starting point is communication. Is she verbal? If not, can she use pictures/gesture/sign to communicate? If she displays certain behaviours, try and find out why they are happening. All behaviour is a form of communication. I’m in danger of writing a colossal amount here which may not even be relevant so I will stop here, but I am more than happy to talk about it with you!

@Mutabilis

Thanks for answering my question, it is helpful to know that the NHS process is so long. That is what I suspected. I can't afford to go private but I think I'm happy to make my own adjustments for myself, for me it's mostly self acceptance. I already have workplace adjustments for dyslexia which cover a lot of my difficulties. If you don't mind answering another question, do you consider yourself to be imaginative? It's where I feel maybe I don't have autism as I've always lived in a bit of an imaginary world, and had imaginary friends (instead of real ones), so I thought I couldn't have autism but I've recently read a few autobiographies of autistic women who are similarly imaginative. My imagination is limited in other ways though- I fall to pieces if my train is replaced by a bus for example, unless I've planned in advance I just can't think what to do.

It sounds like getting a formal diagnosis is probably unnecessary then, I’m glad you can have adjustments made and can start to think about yourself as autistic.

Imagination is a difficult one to answer. I suspect it probably depends on context for me. As a child I know my friend and I used to play with stuffed animals etc and role play with them, I know that to me they weren’t just stuffed animals and that we weren’t re-enacting films or whatever. But then I also don’t know if she led that and I followed her lead? I know I used to write stories. I really enjoy art but have to have some sort of reference material, I can’t just think up something. I might have an idea of what I want to do, but then would need to research for some sort of starting point.
I think my imagination has got worse as I’ve got older, I imagine that applies to most people but I know at school if a child wants me to role play with figures I find it really difficult to know what to say if it’s not a familiar experience/storyline/if they can’t lead it. I do know that autistic girls especially (rather than the more “typical” autism mostly presented by boys), can have good imaginations. Some create wonderful imaginary worlds, probably as an escape from the world we don’t fit into. I do kinda wish I had an imaginary world to take myself off into! So I definitely wouldn’t discount autism as a possibility based on imagination, it’s becoming increasingly known that “lack of imagination” is not a definite.

Hi Megmargs

Thank you for this interesting thread. I have a couple of questions about diagnosis.

You say you were diagnosed privately - how did you go about that, what is the starting point? How long did the process take from start to finish?

Did your employer question the fact that it was a private assessment, not NHS?

MegMargs I fiddle with my hair if I'm getting anxious but them my mum moans at me & tells me to stop fiddling with my hair, she is 82 & doesn't make any allowances for my autism, I'm convinced that she is autistic because she is very rigid in her thinking, everything is her way or no way, I can ask her to wake me up at say 11.00 & then she will wake me up at 10.15 & when I complain I get told it was near enough to 11.00. I suffer from ME/CFS as well as autism & she doesn't get that if I have had a rough night & haven't slept well I may not be up very early, her answer is that no matter what kind of night she has had she is up at the same time, she insists on getting up at 7.30 every day when she has no need to, then moans at me that she is tired, if I dare mention that she could have a lie in I get my head bitten off. We are polar opposites & it makes it hard sometimes.

@WitchesSpelleas

Hi Megmargs

Thank you for this interesting thread. I have a couple of questions about diagnosis.

You say you were diagnosed privately - how did you go about that, what is the starting point? How long did the process take from start to finish?

Did your employer question the fact that it was a private assessment, not NHS?

I can’t remember how exactly I found the place who assessed me, I have a feeling I found a Facebook group for autistic women in the UK and asked for recommendations. I then went on their website and emailed them asking how to self-refer. They replied really quickly, and also gave me information about how to request them via the NHS and patient choice if I wanted to which I thought was great. I filled in an appointment form, paid a deposit and then received an appointment date and a (lengthy) questionnaire to fill in and return before the appointment.

I initially emailed them in January. I was diagnosed in March (it was originally April but I had the option to be put on a cancellation list). Employer wasn’t bothered, to be honest I don’t think they know much about it and I explained to her that I went private rather than waiting three years. I had recently been signed off sick so I think she understood that time was a factor.

@Nat6999

MegMargs I fiddle with my hair if I'm getting anxious but them my mum moans at me & tells me to stop fiddling with my hair, she is 82 & doesn't make any allowances for my autism, I'm convinced that she is autistic because she is very rigid in her thinking, everything is her way or no way, I can ask her to wake me up at say 11.00 & then she will wake me up at 10.15 & when I complain I get told it was near enough to 11.00. I suffer from ME/CFS as well as autism & she doesn't get that if I have had a rough night & haven't slept well I may not be up very early, her answer is that no matter what kind of night she has had she is up at the same time, she insists on getting up at 7.30 every day when she has no need to, then moans at me that she is tired, if I dare mention that she could have a lie in I get my head bitten off. We are polar opposites & it makes it hard sometimes.

I can see why that’s such a difficult situation to be in. I haven’t disclosed to my grandma because I know she wouldn’t understand and she doesn’t need to know. I do wonder if the fact that autism research only really started in the 40s has anything to do with older people not really accepting it. It does sound like she has traits and I can imagine it’s difficult to live together when those traits clash. I know of some autistic parents of autistic children whose sensory issues clash, for example a noise sensitive parent with a verbally stimming child. It must be so difficult to find a balance.

Sorry OP I realise now I asked a stupid question, considering Autism is such a huge spectrum.
My son is verbal yes, he gets very overwhelmed and then seems over excited, then seems to be not aware of his surroundings properly. He ends up scaring his younger sibling, by getting very close and squealing and flapping his hands in her face for example. This happens especially when he first comes downstairs in a morning and when he gets in from school. So I guess it’s the transition that he struggles with.

@megmargs

Thanks for your reply. By input I guess I mean educating DD about her traits and helping her to manage. She's super clever and an excellent masker but I feel like some of the things she doesn't 'get' socially make her vulnerable.
My DH is a little dismissive about it. Recognises her 'quirks' but says things like, where do you draw the line between quirky and autistic. I feel like if we identify it just among ourselves we can provide more support.
She also never sleeps

My son is autistic as well, plus my niece & nephew, my nephew is really badly affected, he has a place at a school run by the Autistic Society & will never be independent. My son is 16 & doing his A levels, he wasn't diagnosed until he was 9, he seems to be settling down, he was a nightmare as he was growing up but has finally found his feet, a big change from all the years he refused to go to school.

@BornOnThe4thJuly

Sorry OP I realise now I asked a stupid question, considering Autism is such a huge spectrum. My son is verbal yes, he gets very overwhelmed and then seems over excited, then seems to be not aware of his surroundings properly. He ends up scaring his younger sibling, by getting very close and squealing and flapping his hands in her face for example. This happens especially when he first comes downstairs in a morning and when he gets in from school. So I guess it’s the transition that he struggles with.

I have a feeling I referred to your son as female, apologies if I did!

I think you’re spot on with the transition probably being the issue. I can only speak for myself, your son might be completely different, but I know that in the mornings (as an adult as that’s when I started really struggling) my mum knew she couldn’t speak to me before work because I just didn’t have the capacity. We used to just dance around each other in the kitchen like morecambe and wise without talking! In the mornings it may be that he’s coming from a quiet, private space to a noisy space with other people in it. It may seem quiet to you, but he may be sound sensitive. At the other end of things when he’s coming home, again it’s another adjustment to a different environment. Perhaps it could help if he immediately goes upstairs for some time alone when he arrives home?

The flapping and squealing is him self regulating, so there’s clearly an element of stress there for him. There are loads of sensory “toys” available, or he might just want to jump about for a bit. If it was part of a routine where he comes home and goes somewhere quiet and private for a little bit, he could flap and squeal all he wants without scaring his sister.

When he seems not aware of his surrounds, he could be dissociating. He’s just checking out for a bit because it’s too much. I don’t really do this very often, it’s mostly me just going really quiet and staring into space when I can’t be social any more. He might just need “ignoring” for a bit until he comes back around.

I would encourage as much stimming (the hand flapping etc) as possible as it’s really important for autistic people, it helps us regulate our emotions which a lot of us aren’t good at. Ask him whether he wants some scheduled quiet/alone time during the day. He might say no, but he might also be unaware he needs it. I know I only tend to realise I am completely overwhelmed when it’s too late!

[quote IdblowJonSnow]@megmargs

Thanks for your reply. By input I guess I mean educating DD about her traits and helping her to manage. She's super clever and an excellent masker but I feel like some of the things she doesn't 'get' socially make her vulnerable.
My DH is a little dismissive about it. Recognises her 'quirks' but says things like, where do you draw the line between quirky and autistic. I feel like if we identify it just among ourselves we can provide more support.
She also never sleeps [/quote]
For sleeping have you tried a weighted blanket? They are a certain percentage of body weight and just add a little pressure on the body which can be calming for some people. I only have trouble sleeping now when my anxiety outweighs my exhaustion so I can’t be of much help with the sleeping, but I do know that I’ve read until I just fall asleep since I was a child. Helps to stop the mind racing. If my mind won’t quiet down I also find it helps to just write down what I’m thinking about and then it’s “out”. Maybe try and find out if it’s a comfort thing or a mental thing, or if she just doesn’t feel tired. Could be scratchy sheets, nightclothes which are just uncomfortable in some way. I’ve always needed a solid bedtime routine, right into adulthood. Before I could read I remember listening to story tapes.

As for educating her about traits, it’s hard for me to say as I was undiagnosed as a child. I’d be very careful to ensure your wording can’t be taken as her doing something wrong though. I remember having “talks” with my dad when I’d done something to upset someone (for example I freaked out and had a meltdown when I got home one day and things had been rearranged at home) and I remember just feeling awful about it and confused, because it was something I couldn’t help. He was trying to do fit kindly and explain I’d upset family members, but my brain was just thinking “but WHY did they need to change it?” I’d just use things that come up as learning opportunities, because it’s possible to learn these skills, just be very careful to make sure she doesn’t end up feeling guilty because I know my whole life I would never want to be rude or upset people but it happens because the wrong tone of voice comes out, for example. Give concrete alternatives about what to do instead, don’t leave any room for misinterpretation.

There are also things called social stories which can be helpful. It’s best to write them yourself so they’re specific to the situation you’re in as it could be confusing if any of the information isn’t right. They may seem a little young if she’s bright, but they will probably help. Some more information about them is here:

www.autism.org.uk/advice-and-guidance/topics/communication/communication-tools/social-stories-and-comic-strip-coversations

How much is a private diagnosis? Is it possible to get payment plans for these?

@BameChange123

How much is a private diagnosis? Is it possible to get payment plans for these?

I can’t really answer that accurately as each place will have a different price and payment method. My advice would be to do some research on recommended assessment centres and choose one which is right for you, then perhaps get in touch with them to see if they could come to a payment arrangement with you.

I previously worked with autistic people. Actually do you prefer autistic person or person with autism? I'm dyslexic a and have mental health issues. I'd prefer person with mh or dyslexia. Anyway that wasn't going to be my question...

I've read stuff about how actually our understanding of what autism is is based on male symptoms. So that makes it so much harder for women to get a diagnosis. Does this make you angry that yet again women are being overlooked or misdiagnosed because of this geber bias?

Same here, got my diagnosis 2 weeks ago. Helpful to know I'm not just shit at life.

@NeonIcedcoffee

I previously worked with autistic people. Actually do you prefer autistic person or person with autism? I'm dyslexic a and have mental health issues. I'd prefer person with mh or dyslexia. Anyway that wasn't going to be my question...

I've read stuff about how actually our understanding of what autism is is based on male symptoms. So that makes it so much harder for women to get a diagnosis. Does this make you angry that yet again women are being overlooked or misdiagnosed because of this geber bias?

I prefer autistic person, as do the majority of the autistic community. This is because autism is inseparable to who we are as people, our brains are autistic brains so to take away the autism would be to fundamentally change who we are. There’s also a feeling that when neurotypical people skirt around the use of the word “autistic” it’s because they see it as something negative, that it’s “more polite” in a way to say person with autism. Some autistic people may have a preference for person-first language, but they are the minority. Either way, thanks for asking!

Yes, our understanding is based from research conducted on males. Leo Kanner was the first person to identify autism as something separate (the term autism had previously been associated with an aspect of schizophrenia) and that was in the 1940s. There was then Hans Asperger and his “little professors”, Asperger Syndrome is no longer a separate diagnosis, it’s all just ASD now as the only difference was IQ. For a long time it was thought of as an “extreme male brain”, but as it was originally thought that females couldn’t be autistic, they never bothered to include females in their research. It’s definitely becoming more widely known about a “female” presentation, which really is currently an atypical presentation as autistic males could also present with similar characteristics. As time goes on and more research is done, and teaching catches up with that new research, I expect it will all be combined as the different ways autism can present. I’m not really angry about it, yes it’s currently a huge disadvantage for those of us who present atypically, but change takes time and in the grand scheme of things we haven’t really been diagnosing autism for all that long. Things are changing, social media gives a platform for autistic people to share their lived experiences, and I expect with each new revision of the DSM the diagnostic process will change. It’s already changed to include the fact that although symptoms (“symptoms”) must have been present since early childhood, they may only become apparent when demands exceed limited capacity, or may be masked by learned strategies. Without that a lot of atypical autistic people wouldn’t get a diagnosis.

@Mabelface

Same here, got my diagnosis 2 weeks ago. Helpful to know I'm not just shit at life.

Exactly my feeling!! Though it’s still difficult to accept that there are things that I just can’t do right now (most things in fact, I’m currently massively burnt out).

As an adult, my diagnosis is definitely helpful (up to a point). I no longer feel like I’m just a crap adult, or lazy, or beat myself up wondering why the hell I find things so difficult when other people just seem to do them.

Why do you say lazy please?

Actually please could you explain the whole paragraph. Thank you.

@Didyousaysomethingdarling

As an adult, my diagnosis is definitely helpful (up to a point). I no longer feel like I’m just a crap adult, or lazy, or beat myself up wondering why the hell I find things so difficult when other people just seem to do them.

Why do you say lazy please?

Because basic things are really difficult for me, there are a lot of things where my instinctive reaction is “no way can I do that”, and for years I told myself if I just tried harder or stopped being so lazy then I could achieve those things. Examples include:

• cooking a meal for myself outside of the summer holidays
• not sleeping a lot at the weekend (now featuring: having a nap after getting home from work)
• doing things (anything) after work or at weekends
• being able to stick to all the things I manage to implement after being off work for extended periods, such as light exercise, maintaining a clean house, cooking a nutritious meal etc.

When I am working full time, that’s all I have the capacity to do. I work, and I come home. That’s it. As I appear very well-functioning and “together” to the outside world, most people’s reactions would probably be that I am just lazy, that if I just tried a bit harder or made things a habit that I could do these things. It doesn’t work that way, believe me I’ve tried (and tried and tried and tried...)

I don't think any neurotypical person understands how exhausting it can abe having ASD, the effort of trying to appear "normal" all day is exhausting. Imagine being somewhere that you are terrified but can't show it, getting poked with something sharp, having a light shone in your eyes, deafening sounds blasted in you ears, extremes of temperatures, strong smells being pumped in the room & having to do an exam at the same time. That is what it is like for someone with ASD every day.

Thank you for explaining Megmargs.

@Nat6999

I don't think any neurotypical person understands how exhausting it can abe having ASD, the effort of trying to appear "normal" all day is exhausting. Imagine being somewhere that you are terrified but can't show it, getting poked with something sharp, having a light shone in your eyes, deafening sounds blasted in you ears, extremes of temperatures, strong smells being pumped in the room & having to do an exam at the same time. That is what it is like for someone with ASD every day.

Exactly, then when you’re stressed the sensory issues get worse which makes you more stressed and it’s just this awful cycle that’s really hard to get out of. When your clothes are so uncomfortable that you feel like ripping your skin off it’s a lot of effort to pretend like everything is ok, but we do it all. the. time.

@Didyousaysomethingdarling

Thank you for explaining Megmargs.

No problem