Support thread - adults on the Autistic Spectrum :)

[fuzzpig]

Hello!

I've seen a lot of MNers mention being on the Spectrum, whether diagnosed or not. I thought we could use a long-running place to chat, share coping strategies and basically to know there are other people like ourselves, who won't judge us for being different.

I'm new to all this myself - only realised there was a possible name for How I Am a couple of weeks ago (thanks to MN)! Now I have a referral to an adult ASD specialist, to see if I have Aspergers. It's all happened very quickly.

Enough waffle from me (for now anyway...) but I hope other people will come along and find this thread useful. :)

TODAY'S THE DAY!!!

Appointment at 2pm.

How did it go Fuzzpig? I just came on here to see if you had been yet, as I thought it must be about now, I hope it wasn't too stressful/difficult.

It didn't happen! I got there and another patient told me they had double booked some appointments, eventually she got seen (having waited an hour). I waited an hour and then the receptionist said "sorry we have to cancel". They didn't check if I was ok or anything

I am pissed off but at the time I was just hurt and I left and cried :( no idea when it will be rescheduled to, and I'll have to look after DCs somehow as DH has his operation soon. And they are moving premises to an obscure and less accessible area

Meanwhile I've been back at work, physically getting a bit better I think but trying not to overdo it. Also trying to sort out working hours etc for while DH is incapacitated.

How are you?

That is really bad that it didn't happen. That would be the worst thing that could happen to me if they cancelled it and couldn't tell me when it was rescheduled to. I would just get really confused and probably start crying like you did too. Where was it you had to go for it? I have asked for meetings/appointments to be changed to a different location before,when it was somewhere I found too hard to get to.

My news is that I have been unofficially diagnosed with Autistic Spectrum Disorder. I've only just been told so I'm not sure what to think about it yet. I am being referred to the neurobehavioural clinic in Brighton to make it official, but not sure when that is going to be.

Hello all, this thread dropped off my list somehow, I was pink but am now silver in celebration of my Ex moving out.

It is awful when you get all prepared for something difficult and then it doesn't happen.

I'd like to say about the ritual/schedule thing - I absolutely hate any repetitive activity unless it's something I'm currently enthusiatic about. Eg I can clean up the kitchen each day for 3 days in a row, after that a stubborn and irritated streak kicks in and I just Won't Do It. Hence I suspect inattentive ADD on top of AS.

Added to which due to the stress of a year on my divorce and settlement, while still under same roof as twunt, I had a short psychotic episode and spent 6 days in hospital - recovered quickly on right meds, they say I have bi-polar but am not sure, think it was massive long term sleep deprivation and I was dreaming while awake.

Annoying thing is psychiatrist had referred me last year for assessment for AS and ADD but the referral got lost. Maybe I should ask again

Oops seem to have spilled out all sorts!

Fuzzpig - I'm very sorry, that was so badly handled re:your appointment. I hope you get sent a new date asap.

Pussycat - you've been through the mill with all the stuff with your ex, hopefully things will be much better now he's moved out.

system - has it sunk in yet re:unofficial DX. hopefully it will ease things a bit with your studies.

Thanks all. Heard nothing yet. In the meantime we've been sorting out loads of stuff for when DH has his operation (8 days!) - been referred to all sorts like portage and homestart as well as other mental health services for me. We are also going to put DS in nursery full time for up to 5 weeks as my health is not much better, I'm barely coping with five hour days let alone doing all the childcare. I'm on a painkiller called amitryptiline which is making me very groggy although hopefully that's just because they are new to me.

Wow big news system, that sounds really positive and hopefully the referral to Brighton will come through quickly! And you've done really well to get that, because if you hadn't been brave and visited the doctor and your other appointments, it wouldn't have happened :)

So glad to see you back silver, I've been wondering where you were! I'm so sorry you've had an awful time. Hopefully it is the end of a horrible era and you can now start afresh as the new silver :)

fuzzpig glad your DH is getting his op, and that there seems to be support in place for you. Maybe once the stress of all that is over your health may improve a bit.

And hello to everyone else. system it will be v interesting to hear how you get on.

Its not definite yet so they mght still say I don't have it. At the moment that is what I am hoping. I keep thinking about the appointments i've had and what I did wrong to make them think I had asd when I was trying to be normal the whole time. In the past when people mentioned it to me I didn't think it could be right but it was only in the last few months when I started to read abbout aspergers syndrome, I did start to think it could be true but I never asked for an assessment for it.

I had an assessment with an educational psychologist through university because of the problems I've had with the work. The report from that didn't say asd but my student support worker did say was similar to ones from people who did have it. It did recommend I saw a speech and language therapist and a clinical psychologist. I did go to see the speech and language therapist but my GP wouldn't send me to the psychologist because she thought I was depressed and wanted me to go to a psychiatrist first. The speech and language therapist and psychiatrist both wrote reports about me but I didn't get to see them and they didn't say it to me but they both wrote down they think I have asd. The reports from them and the educational psychologist got sent to the other psychologist who didn't even ask to see me and just decided I must have asd because of the reports and then wrote to me to tell me that in a letter. It says that they think I do have it but they can't officially iagnoses it so they are referring me to the neurobehavioural clinic so they can confirm it and give me an official diagnosis.

I don't know if Iwant to go to that appointment at the neurobehavioural clinic. They are going to be biased because they have already been told I have asd. All I can do is try even harder to be normal and hope they decide I am ok or find I really have something else. I would like it to be something that can be cured not asd which you have for the rest of your life and will never be like normal people.

System I'm sorry I misunderstood you, I thought you were hoping for the dx. I can see why you are worried about it though - the idea of permanence has been the hardest thing for me. I always held on to the idea that I was depressed and therefore would be totally different in the future when I would find the right medication or magically become happier. Knowing that I will always have AS is SCARY, of course it is, I don't want to be like this! But the sooner I get the dx the sooner I can start to fully accept it, I think. Hope that makes sense. And you know whatever they say we are all still here for you if you need anything.

I'm sorry System, I didn't know you didn't want a formal diagnosis. Also it seems very unfair that you haven't seen the salt/psych report.

I had started to get used to the idea I might have As and was thinking about asking to be assessed at some time in the future, like after I had got everything sorted out at university. But that would be my choice to do and now I dont have a choice. I don't like it when people disrupt plans that I have already made or make me do stuff that either I don't want to do or do it at the wrong time and not in the right order.

Also it was a shock to see asd written on the letter because I had never talked to anyone about it before except on here. I was going to the appointments so I can get a good report for university so I can repeat a year and get allowed extra time for assignments only. I wasn't expecting do get diagnosed with anything. I wanted them to think I was ok so that they write down I'm ok to stay on the course. But if they could tell when I'm trying to be normal that means other people can tell and probably think I'm crazy too. I don't like it when I know people are talking about me but I dont know what they are saying because I also worry in case they are saying bad stuff about me.

System :(

I understand your worries but please try and remember that what they will be writing is not bad, having Aspergers is not bad. And uni won't kick you out for having it - if anything you will be more likely to get your extra time if you have a dx, I'd have thought.

bear in mind these are highly trained professionals who have suggested this as a diagnosis, the random person on street/at uni would not be able to tell. I do sympathise re:worrying about seeming normal, sometimes it really gets me down not being normal socially and how much effort I have to make and still say/do the wrong thing. Noone can make you turn up to the clinic appointment, but I don't know whether it would get you better support at uni having the diagnosis. You don't have to decide now, you can cancel up to the day of the appointment.

I am only worried that they will think it means I am more likely to fail again because I have already been told I am not allowed any more fails. Also 1 course I wanted to do after this one now won't accept me because they don't take anyone with any fails with no exceptions. I don't want anything else going against me now.

I am going to try and look at the only positive thing about going to the clinic appointment. At the moment its only an unofficial diagnosis. It only says they think it is likely I have it. So if I go I will get a definite answer yes or no and I like much better to have definite answers to things.

system of course you don't have to do anything you don't want to. However, if you do have AS, imho it would be better to know, both for you and for the university.

I am older, and have ended up with a diagnosis of bi-polar, which I think is either wrong, or co-morbid with AS and ADD. I have suffered with depression and self-hatred at my seeming inability to fulfil my potential, and only since my (self) diagnosis have I been able to forgive myself, understand myself better and put some strategies in place that help. I don't blame anyone - am 60 now and when I was your age there was little or no knowledge of AS, let alone in women.

I tell people about the moderate face blindness these days, and am happy to make the effort to be sort-of-normal in daily life, I also recognise that I need down time because it is an effort. I no longer berate myself, but accept that I have great strengths, like an ability to think outside the box, and persistence on tasks I like, that compensate for other problems like dyspraxia, and overlooking the bleedin' obvious.

Wishing you the very best.

I'd like to join this very interesting thread if I may.
My ds1 (now 27) was diagnosed with ADD when he was 7 but I believe he is also AS.
I feek I have a number of the traits and I've just done the AQ test mentioned here and scored 42! I did it a second time as I thought I had maybe not answered correctly as it was such a high score, but I scored the same (42) the second time.

hello! :)
do you feel that you have struggled with the traits you have? do you think you will seek a diagnosis or are you happy without?

Hi fuzzpig, yes I do feel I have struggled and have only in recent years started to understand why.
I don't think a diagnosis would change anything for me so no I don't think I would seek one.

The subject of face blindness came up when I saw the psychiatrist. She didn't believe me though. she said it was just because I don't look at people properly/ make eye contact. But I have looked at the faces of my children every day since they were born, yet now they are not in the same room as me I couldn't describe what they looked like to anyone. I'm sure that's not normal and why would I want to make up something like that. Its horrible and makes me sound like a bad mother.

No it's not normal but it is related to the AS and it certainly doesn't make you sound horrible or bad! It's not your fault.

Hermione are you planning to tell people about your AS? I'm glad you are comfortable with the self diagnosis and hopefully you can start being more comfortable with who you are. I've found it a bit of a rough ride, despite feeling happy with the AS label, but overall it's definitely a positive change.

I've got an appt with a local mental health organisation, they have links to lots of different things and create individual help programmes. I'm meeting them in a few weeks to see what would help me. I guess that won't focus on the AS though.

Also have my appt in November with the chronic fatigue syndrome clinic at St Barts hospital, and found out that DCs' school are going to pay for 2 of the 5 weeks full time nursery places for DS while DH recovers from his operation (which is on Friday eeeeeek!)

Just bumping this back up

:)

hi. Thanks for bumping there's quite a few of us waiting outside.

Just marking my place here after being linked from the other thread

Question: is there any benefit whatsoever in a diagnosis in adulthood?

I left school in the 80s when no such thing was recognised etc. I can see the point of it for extra support in school etc., but in adulthood?

Welcome! :)

Adult diagnosis - well, I'm not sure yet as I'm still waiting on mine (they cancelled my last assessment after I'd waited an hour! ) but I think it will help me. Realising that I have AS has already helped to some extent in that I'm a bit easier on myself, when I find things difficult I can think "this is not my fault" instead of taking yet another dent in my self esteem.

I think it will help at work too - my managers are already aware and have been reasonably supportive, but they've also said with a diagnosis I will be classed as disabled and eligible for 'reasonable adjustments' in the workplace etc. It will be nice to have something official that says I'm not being rude or awkward, I just have a different brain!