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.
First of all I just want to say that I understand your distress and really feel for you. It's a horrible and confusing situation to be in. There are often several different parts to an ASD assessment and they can take place some time apart. The interview with the OT and another person could be an observed session called ADOS-2 where they identify and record specific indicators that someone is autistic. Perhaps you could ask them to clarify this for you.
Many women only get diagnosed with ASD when they are in their 40s or 50s. The recognition that they are autistic often only comes after years of struggling with anxiety, depression, relationships and work. They have frequently acquired other diagnostic labels because their autism was not diagnosed - Depression, Generalised Anxiety Disorder, Bipolar Disorder, Personality Disorder.
As you are finding the assessment process itself can create additional confusion and distress. The clinicians may understand what they are doing and why but sometimes this is not communicated to us clearly enough.
Talking about a complex and traumatic past can trigger difficult feelings - can you tell them that you are anxious about this and need support? As far as all the contradictions go that seems to be quite typical, especially where we have been doing our best to fit in and wearing a mask for such a long time.
It's entirely understandable that you are questioning whether or not to continue the process. Having no clear timescale makes it much worse. I had the same thought myself at one point. It's hard to comment on whether or not an ASD diagnosis would be good or bad for you. I am trying to get one because I believe my anxiety and depression are the result of trying to fit into a neurotypical world. I also believe ASD explains my work history and relationship problems.
Other people who have already been diagnosed have pointed out that professional support afterwards can be limited. However many people find it hugely helpful to know that they are autistic and feel much more calm and in control of their lives. Many of us find talking to other autistic people on this forum the most helpful form of support. As someone else said recently autism feels a lot different from the inside then it looks like from the outside.
I've got a complicated and tangled up past with really distressing stuff in it too. I'm in my late 50s and I feel like I'm finally starting to make sense of everything. It is important to have support around you in order to cope with this. I have been getting such a lot of encouragement, advice and reassurance from the lovely people in this community.
if you don't get an ASD diagnosis you could still be autistic it just means the criteria agreed in DSM-5 haven't been met. Or it could be that you have a similar but different condition. Whatever the outcome, the assessment process should give you and the clinicians a clearer understanding of the difficulties you are experiencing and potential solutions.
Wishing you all the very best.
Thank you so much, great replies