Undergoing assessment, really struggling

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.

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 

??? Why are you being horrible to me?    

Are you sure it's not BPD you have? 

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.

Thank you so much, great replies 

Thank you so much for that

I don't know what to make of that but you just made me feel sick so thanks....

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.

..and the 'act' is the act of trying to be normal when you feel anything but...things just never come out right...

Hello,

I’d definately say don5 give up on the process. I’ve just been diagnosed myself after a long wait and feeling very much like you do. For me it has been a massive relief, just because I now know what’s been causing me so many problems. In my own head I’m not a defective ‘normal’ person anymore, I’m an OK Aspie! Although of course all the issues don’t suddenly go away, at least they all make some sort of sense now.

It is massively difficult to deal with all the uncertainty around waits I know. Dealing with uncertain waiting times for any sort of mental health support over the last few years has regularly made my head want to explode too and I understand the temptation to jack it all in. I think i could have handled waits better if they could just have given me a definately timeline. It’s the uncertainty that’s a nightmare. To be honest they really ought to know that’s going to be a massive issue for anyone on the spectrum!

It does sound to me like a lot of your problems really might be due to being on the autism spectrum though, So id say hang in there if you can. See if they can give you an idea of what the wait will least. That might help a bit? Usually I got some sort of fairly helpful reply to that question in the end. I think maybe eventually people thought it was easier to answer than hear my voice!

best of luck with it all, I’ll keep my fingers crossed for you. 

Thanks for the reply and sharing this with me, I will take a look at the book, it is good to know other people can find the process itself very difficult.

Hi, NAS49761,

I can relate to a lot of what you're saying here, I'm 52 years old and currently waiting for a reply to the questionnaires I've sent in for assessment for Asperger's syndrome. I was also seeing a Wellbeing counsellor because of anxiety and depression, but she is still in training and unable to help me with my social anxiety just yet, so after the initial session I'm back on the waiting list.

Like you, I've felt like withdrawing from the whole process, because I'm finding it really stressful not knowing how long it will take, and trying to keep it all together in the meantime. But I really want to know whether I have autism or not, and I can't bear the thought of breaking off and having to start over at a later date. I'm reading a book called "Very late Diagnosis of Asperger Syndrome" by Philip Wylie, which I would really recommend. It is helping me to understand the feelings I'm having right now, and what I might expect to feel later if diagnosed. I'm also reading any book I can find which has something positive to say about autism, for example, "Uniquely Human" by Dr Barry Prizant, which is aimed more at caregivers and parents, but still worth a read.

I suppose if it turns out I don't have Asperger's syndrome after all this preparation will have been in vain, and I don't know where I would go from there, but I'm just doing having to do what I can for now. Maybe there will be someone else here who has been through that and could advise both of us.

Best wishes.

I've just noticed a mistake, it should read can you have been 'hyposensitive' for part of your life then 'hypersensitive' later.

Don't give up the process just try and let yourself go with the flow