What helped you while waiting for an assessment?

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. 

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.

The AQ tests are very much just an indication, they can neither diagnosis or rule out autism. But if you do score above the cut off point, it just shows that you 'might' be autistic because you're experience some autistic traits. The actual assessment doesn't rely on AQ tests, though some do require questionnaires to be filled in. The problem with therapists is that they're very rarely familiar with autism, especially how it presents in females, so the chances of getting a therapist who could spot it, is low (not impossible. It has happened, just rarely). 

My list was long, even the 'short' version. The long version could be turned into a novel, I'm sure! Lol!  I used it to prompt me during interviews and when filling in forms, then I gave a copy to the assessment team to read at their leisure. I don't think any information is too much (besides, I think the very nature of the autistic mind leads one to making detailed lists! Lol!).

The AQ tests are very much just an indication, they can neither diagnosis or rule out autism. But if you do score above the cut off point, it just shows that you 'might' be autistic because you're experience some autistic traits. The actual assessment doesn't rely on AQ tests, though some do require questionnaires to be filled in. The problem with therapists is that they're very rarely familiar with autism, especially how it presents in females, so the chances of getting a therapist who could spot it, is low (not impossible. It has happened, just rarely). 

My list was long, even the 'short' version. The long version could be turned into a novel, I'm sure! Lol!  I used it to prompt me during interviews and when filling in forms, then I gave a copy to the assessment team to read at their leisure. I don't think any information is too much (besides, I think the very nature of the autistic mind leads one to making detailed lists! Lol!).

Thanks for your reply Out_of_step.  I felt just the same - I wanted to write about my autistic traits in as much detail as I could, because I express myself much better in writing, and in conversations I don't always have time to think of the best way to explain things.  And yes, I also worried that I wouldn't be believed.

It's so helpful to read about everyone else's experiences on here, it makes me realise that a lot of people have felt the same things.  

My list was about 12 pages long. I could have written the same again. I probablt spent about 15 hours on it. (I think this was an example of hyper focus). I made this list because I didn't think I'd be believed and it helped me as a prompt during the developmental interview and also if there was anything I missed out during this interview. I also told them that unless asked specifically,  I sometimes don't give all the information.  So the writing was good because I'd had time to formulate ideas etc which I might have missed verbally in the moment. 

Also, it's a spectrum and everyone is individual it affects everyone in different ways. Sensory might not be much of an issue for you. Or there might be aspects of your life you consider normal but they actually aren't.  

Stimming wasn't in the criteria and didn't come up on my assessment, although they mentioned restricted behaviours. I don't think stimming is anything exclusive to autism.

Hi JustMe, 

Thanks for your reply.  It's a relief to know that it's not only me who's made an extremely long list.  I've just been thinking back over my life and writing down all the autistic traits I showed, social mistakes I made, people I fell out with and so on.

At the moment I am wondering if I'm not autistic because I don't consciously stim.  I fiddle with my hair a lot, but I think probably all women do that.  I do have lots of obsessive behaviours, but that might be OCD, not autism.

The other thing is sensory issues - I've read about many autistic people who have things that are really difficult to deal with, e.g. feeling pain when they hear particular sounds, or not being able to have their hair cut.  The only two things I can think of that might be sensory issues are 1.  I have a startle reflex that is more sensitive than most other people's, so I tend to 'jump' at a sudden loud noise more easily (like in a cinema, I tend to jump at noises during the film which don't seem to affect other people).  But that might just be anxiety, not autism.  2.  I sleep very lightly and wake up often during the night, and I need to wear ear plugs and an eye mask, use blackout curtain liners, and at this time of year, I have to tape black bin liners over the windows at night so that I don't wake up from the light.  

I don't know if these count as sensory issues or not.  I might just be anxious, have OCD, social anxiety and insomnia, but not autism.

I'm trying not to think about it too much, because I realise that it's my mind wanting certainty, which I can't have yet.  I'm trying to keep busy.