What helped you while waiting for an assessment?

Hi Untoward,
Thanks for your message, and I'm really glad that you found clarity for yourself.  I have been doing similar things - reading about autism, listening to talks and so on.  I'm becoming more and more sure that I am, but what I think I fear is being sure and then having a negative diagnosis.  Perhaps I should just think 'I will cross that bridge when I come to it'.  Maybe even if I am diagnosed not autistic, I can still use some coping mechanisms that autistic people use.  If they are relevant to me then why not.  I think above all though I would just feel ashamed if I was neurotypical but not functioning as I should be.  It would feel like my difficulties are all my fault.  But I will try not to think about that because I don't know yet.

Hi JustMe,

Thanks for your reply and sharing your experiences.  
I'm confused about the various tests for autism.  I took some online tests and my scores were above the thresholds, but not very high, and on some tests I was below the threshold.  But when I observed my behaviour and looked back over my life, I did see lots of indications that I could well be autistic.  What also helped me was talking with a friend whose son is autistic.  When I started thinking that I might be on the spectrum, I contacted him.  I was expecting him to say 'don't be silly, of course you're not autistic', but to my surprise he said he had always thought that I was.  I asked him why nobody else had said anything to me, and he said that many people don't know much about autism, so they wouldn't recognise the signs.  I've been for therapy on many occasions during my life, and none of the therapists identified that I could be autistic. 

I'm hoping to be assessed at the Lorna Wing Centre, and they do a diagnostic interview (the DISCO) rather than specific tests, as far as I understand.  Like you did, I've been writing a long list of reasons I think I'm autistic.  It is very long, and I wonder if it's too much and they won't want to read it, but it sounds like they want as much detailed information as possible.

I'm glad to hear that you got the answers and the clarity that you wanted.

Hi Out_of_step, thanks for your reply.  Yes, that's a really good point - I genuinely have reasons to think I might be autistic, so I'm not a real fraud.  Thanks for the suggestions.  I find this forum really helpful, people are so kind and supportive, and it's really helpful to hear that others understand what I'm feeling and have felt the same way.

Hi JJ, thanks for your reply, I found it really helpful.  I have been trying to focus on other things as you suggested.  Like you, I feel the inclination to 'pause' other things and focus on finding out about autism.  Maybe this is also an autistic trait - wanting to find a definite answer, and finding uncertainty difficult?
I have been working as before, but feel less productive.  I will keep trying to focus on work, looking for activities that really take my mind off it in my free time, and trying to keep in touch with friends.  Yes, there is a lot more to life than the A thing!  

I think it's probably normal to go through a stage where you are adjusting to the new knowledge about yourself.  I find that I'm observing myself and my behaviour, and thinking 'yes, that's why I'm anxious in this situation', or 'that's why that person didn't understand what I said, and I had to repeat it'.  In a way, this is helpful.  I think it will be temporary and hopefully over time I will be able to obsess about it less.

Hi Ben, I'm really glad to hear that the diagnosis brought you a lot of relief, it must have been good to finally have an answer.  

I can relate to what you say about the uphill struggle.  I found that I did well in very structured situations, like school and academic education.  After my education finished, I found it very hard to get established in the 'real world', and I have never felt that I have lived up to my potential.  I've felt a strong sense of failure for many years.  I don't know if this is related to autism.  On the other hand, I wouldn't want to use autism as an excuse for my own failings.  I've also never had a long-term relationship.

Thanks very much for your post - it is very comforting to know that others have felt the same way.

Errr absolutely. Waiting for an assessment at the Lorna Wing Centre myself and going through similar thoughts and emotions.

Not much is helping me with the wait. I need the answers to move forward and all of the things that would normally distract me aren't working at the moment. ALL I can think about is this.

I have no handy hints. But you aren't alone.

I'm on a waiting list now. I did get a lot of doubts early on and thinking I was a fraud because I am high functioning. In fact for a few months I wasn't convinced myself. I kept alternating between feeling like a fraud and having a new understanding of myself. I'm my own harshest critic. I've always blamed myself for my inabilities to be like everyone else and spent immense amounts of effort trying to be normal.

But in typical autistic fashion I spent months reading absolutely everything there is about autism, all of the research, watching endless lectures, studying all the diagnostic criteria, etc. It actually explains everything I've experienced in my entire life so perfectly that I'm now at the point where I don't have any doubts.

You could try reading other people's stories and watching autistic YouTubers who were diagnosed as adults and see how much you relate. Even if you are borderline, that doesn't mean you don't have struggles and you might be expending a lot of effort on masking.

I've not long been diagnosed (ASD, high functioning) very, very late in life (nearing retirement age) and I was very unsure whilst I waited. I had done so much research and I was positive I was on the spectrum but I still kept thinking, "I've been married, I have children, I have grandchildren, I've run my own business, how could I possibly be autistic!?". I had taken the AQ50 and scored 45, which is not borderline, but I felt I coped better than that score would indicate. I took others too and they all came out around the same level, which belies how i see myself. So that was a worry. But then I'd have to remind myself of my social problems, my sensory issues, my obsessions and need for routines etc, not to mention a (finally) failed marriage, and several failed relationships thereafter. Looking back, they failed mostly because of me and my 'issues'. How my husband put up with my regular meltdowns and anger eruptions for 13 years, I don't know. At the time I blamed it on bad PMS, even though it was EVERY week of the month, not just one. Hey ho. Plus, I was very self centered, without realising what I was doing, so focused on having things how 'I' needed them to be that I ignored everyone else.

So, my way of coping whilst I waited was just to remind myself, whenever I started to feel doubt, of all my traits, and how they presented. I wrote a very long list to take with me to see the doctor for the referral, and an even longer one, more like an essay, to take to my assessment. Because of my age, I had no one that knew me as a child so I spent a lot of time remembering my childhood, as painful as that was, and documenting all the problems I had when young, all my little oddities and strange habits, and how they continued, or not, into adulthood. I was obviously wrong to feel a fraud because I was given a very definite diagnosis. 

JJ said:

it was like a yo-yo,

Definitely! Stick it out though.  It's ok to feel up and down. I still do even with a diagnosis. You have to keep reminding yourself why you have put yourself forward for diagnosis. It's not just something that everyone does, you have all the reasons which you know yourself. What helped? Coming on here, talking to my partner, reading some AS books, making notes about how I felt I presented.

I really, really felt the weight of uncertainty while waiting. (And people on here were really nice about it!) And it was like a yo-yo, as you say, between feeling a total fraud and suddenly having a whole new understanding myself....

I think I could have paid a bit less attention to it (diagnosis) than I did?!  

Sure there are lots of new ideas and possibilities to ruminate on but also - everyday life, work, people, interests...  I think I might have done better if I hadn't put almost everything else on 'pause' and focused only on the A thing.

Yes Ultramarine, I recognise a lot of what you say.  I wasn't diagnosed until I was 67 ( I was taken to see someone as a child when I threw tantrums, but I think my family buried that beneath a blanket of respectability).

My diagnosis is ASD - High Functioning, I also have OCD.  I've lived independantly all my adult life, but it has been an uphill struggle a lot of the time.

As I've just told a poster on another thread,  I found getting it officially recognised brought me great relief, as I suspect it would you,

I hope things move along soon, waiting can eat away at you.

Ben