Published on 12, July, 2020
Hello everyone, I am currently undergoing the assessment process for ASD. This came about because I was referred to Mental Health Services for Depression and Anxiety, had issues with this all my life and had some kind of breakdown about a year ago. I began therapy with a psychologist and work with an Occupational Therapist to work on exposure therapy for anxieties. I've found the sessions with the psychologist really confusing due to communication/interaction issues (this has been a problem for me as long as I can remember). The OT asked me in one session if they could do some tests as she was picking up on some things and mentioned Autism in the conversation. Interestingly, just about a week earlier I started googling things I have difficulty with and it was often within information regarding Asperger's, up until that point it never entered my mind. I've had what seems like a very common feature of being aware I was different somehow from other people around me and have felt that way as long as I can remember. I did a questionnaire and scored high but didn't think much of it, so wrote down the name of the test and the result. I kept it in my notebook that I took to appointments and when the OT mentioned this I told her about the test and gave her the information from it.
I have done 3 questionnaires now with the OT over a couple of weeks and I am getting to the point where I just can't take any more. I don't know what the scores have been. They told me I will now have an indefinite wait for an interview next with the OT and another person and then all the information will be discussed at a meeting with psychiatrist and other professionals to decide on diagnosis. They said there is a waiting list and not sure how long, could a month or longer.
I have sensory overload issues but to complicate the picture these have been most troublesome since I became ill around 20 years ago so not sure if connected. My brain feels like an incessant machine for processing information to the point I just shut down and literally have to close myself off from the world. My major difficulty is with contradictions eg things have to be one or the other, I really struggle with ambiguity and uncertainly so if I can't read a situation or a person ie what they're saying or what the meaning is of what they're saying my brain doesn't stop going over things until it can make sense of it. Trouble is, I can't make sense of a lot of it so are always in this vicious cycle. I have said to my OT several times I wish I didn't have to speak, I wish I was a mute, things would be so much easier. I have a lot of difficulty verbalising how I feel and have to write a lot of things down and communicate this to OT/psychologist. It confuses me how I can put things down in words but struggle verbally.
And this brings me to my question. I am considering withdrawing from the process for the following reasons: Is it usual to have this wait between the questionnaires and the interview? The process itself is causing a lot of distress to the point I can't even keep my routine together, that's just completely breaking down. If I don't have ASD then what does that mean and I don't think I could cope with that. The very nature of ASD causes even more confusion for my brain as it just can't make sense of it all, it just seems like more contradiction and confusion. For example, can you have difficulty with change but still like to explore, can you have been hypersensitive for part of your life then hypersensitive later? Also, there is a lot I've mimicked over the years and learned (I am a 49 year old female) but always feel I'm putting on an act and that makes me feel like a fraud and a liar, do other people feel this way? I think its the way my brain interprets things in that to me 'pretending' is a lie, I always worry that sounds mad but I don;t know how else to say it.
My life has been full of stops and starts (bit of a disaster really) and I've never quite reached what I was trying to achieve, for me, that was a 'normal' life. I have one friend who, if it weren't for them I would not be here, In fact I feel I cannot manage without them. They act like an interpreter for me trying to help me make sense of things. I have no doubt I would be locked in my house constantly and never speak to anyone if I didn't have this help.
I joined a mental health forum a some time ago but have never been able to post on there, regardless of my diagnosis, I feel I could do that here and not fear any malice.
I have read several posts and a lot resonates with my situation, although I do have a complex traumatic past which I think can make things even more difficult to untangle.
Very best wishes to everyone and any replies will be appreciated.
Thank you.
Welcome to the forum.
I won't repeat what others have said so well already, but I thought I'd just quickly address a couple of other points that haven't been mentioned yet.
Firstly, the experience of struggling with therapy is very common for autistic people. Therapy relies on being able to talk openly about our feelings, and this is something that an awful lot of autistic people struggle with. Because we struggle to understand the emotions of people around us, we don't have much to measure our own emotions by - it's not that we don't have them, in fact, they can be overwhelmingly powerful, but it can be very hard to find common language with other people so that we can talk about them. Unfortunately, many therapists make the mistake of reading this as repression, delusion, or simply lack of commitment to the therapy. It can help a great deal to know that this is the case, so that therapy can be guided towards helping with emotional expression before trying to tackle any deeper issues that otherwise are impossible to talk about.
Sensory sensitivities, and all other autistic traits, can and do change, either slowly over time as we develop coping techniques, or between different situations; this can depend on all sorts of factors, such as stress/anxiety, illness, what company we keep, fear of change, etc. So try not to worry that your traits seem very variable, or even paradoxical; that is perfectly normal, and something we all experience.
As for your assessment; I would say that the biggest reason to go forward is one that you've already mentioned - the difficulty of dealing with ambiguity. Although the assessment process can be very frustrating and stressful, if you walk away, you're quite likely to find yourself getting into circular thinking about whether you are autistic or not in the future. From what you've said so far, it sounds like a diagnosis should be quite likely - as you've seen from the other posters, all of the traits that you've mentioned are ones that most of us here experience, and my life-story and eventual diagnosis have very much the same patterns as yours.
Best wishes.
Your paragraph about the sensory difficulties resonates what my OT said, I've just never known anyone with Asperger's/Autism except for one or two people who have been at the severe end of the spectrum who have not been able to communicate at all verbally so I was a bit stunned to hear her mention that, It is a very complex condition to understand but I feel that might get easier with replies like this and reading of other people's experience on the forum. Thank you
Yes, I find that sensory overload and speech problems often go hand in hand. When I'm very burned out or overwhelmed, my ability to find words can desert me completely, and I can find it just as difficult to understand what other people are saying. At less stressful times, although I'm not as fluent as most people, I can generally get by so long as no-one is talking about emotions or relationships. Conversation in groups are usually the worst; everyone else's words get mushed together, and I can't tell who said what, which makes me completely unable to find something to say very often.
The other problem is that I can make it seem that I'm more fluent than I really am by just parroting phrases that I have learned to be socially acceptable. I'll say something just because I know I'm expected to, and need to do it faster than my brain can process. To the other person, I seem to have answered OK, but in reality I haven't actually expressed anything much about myself or my opinions, nor asserted my needs, I've just said something very vague and non-committal that satisfies the other person's need for a reply from my little store of stock phrases.