Waiting for assessment - and realizing things are difficult

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Hi,

I am in the process of getting an assessment for possible ASD. My doctor has referred me to a specialist team. They turned the referral down as they thought my difficulties were 'too light'. I do, to some extent, understand it: I'm 42, have a university degree, two children, am self-employed - and a specialist in ASD.

... I am also on the verge of not being able to manage my life anymore, but opening up on things you've tried to hide for years is not as easy as I would have thought.

I believe I am just within the spectrum but the difficulties arising from both sensory and social overload have grown over the last few years, especially after my divorce. For the first time in my life, I now have the sole responsibility of running the home I live in - and it's not thaaaat easy.

My main difficulties are basic self-care, organizing, cleaning, clearing up mess, establishing routines and rhythms and communicating with people I don't know (especially outside of work. At work there is a higher amount of predictability, especially within some tasks) and taking care of administrative aspects at work.

To a large extent, I think my difficulties have previously been ameliorated by the fact that I was not self-employed and not divorced. Over the last year and a half I've told myself, that I just needed to get a hold of myself, and THEN things would be better. I just needed to figure out the system of managing my life and THEN I would be calm and have the energy to visit people, go out etc.

But that moment just never seems to come. I also realize how TIRED I am of performing normal social behaviour in some contexts, e.g. on the phone to my doctor, telephone company, business partners, or in the supermarket, traffic etc.

This turned in to something of a rant.

I've agreed with my GP that I meet with her again for her to elaborate on her referral, especially the degree to which I'm stressed and overloaded. Hopefully, this means the hospital will take me in.

If anyone has comments, encouragement or thoughts, please share!

Its so frustrating when you know how you feel, and how hard life is, but you’ve got so good at masking you aren’t always believed because many of these struggles are internal. Having children, a degree, a job are not indicators of how much you have struggled. Most people with Aspergers-type autism are of average or above average intelligence. When I first went to my doctor I took with me an AQ50 questionnaire. I completed it online and printed it off, including the bit where it gives the score. It states something along the lines of ‘score under 31, autism unlikely, 31-35 autism possible, 36 and over autism likely. (I can remember the exact wording or numbers). I scored 44! I then took this to the doctor, along with my husband of 28 years and showed him what it said and asked for a referral. Saying your difficulties are ‘too light’ is surely only an opinion? If you score higher than 35 your difficulties are not ‘too light’! Don’t ket yourself be fobbed off. Be warned though, if you live in the Uk you could still be waiting 3-5 years before getting an actaul diagnosis. Good luck

Hi Lelly, thank you so much for responding. Just to talk to people during this process is so helpful.

One of the reasons for being "good at masking" (but at a high price) is also that I'm highly specialized in this field. I have been trained in, theoretically, understanding the intricacies of nonverbal communication, timing etc.

And, yes, I've used my high intelligence to achieve the things I've done. Yet, I still feel I should have done better, finished uni earlier (took me 9 years, but stuff happened along the way too).
I didn't think to bring the AQ questionnaire, but it does give me a score of 38 and would, maybe make sense for the doctor to see? I think, when my doctor refers me again (which she is happy to do) she will include more about my current stressful situation. I do feel vulnerable sharing it with her, but at the same time, of course, she needs to know about it in order for her to be able to describe it well enough for the hospital to take me in.

Did you find that getting the diagnosis - and the process of it - helped in some areas of your life? How does assessment work in the UK? Is it at hospital clinic or? I'm in Denmark and I do hope that the specialized autism centre will take me in - and that they will be able to give me a good assessment. I think the waiting time is about four-six months, but just knowing that it's going to happen would be some relief.

Just a guess but I think that they may not want to try and diagnose someone who knows as much if not more about ASD's then they do.

I think it does add a dimension to the referral for both them and you.

Would you consider paying for your assessment? We used the Lorna wing centre in the UK and they specialise in girls / women and difficult presentations. It was a one day assessment and we might have been lucky but we got a time within 2 months of submitting the paper work. At the very least it might be worth submitting the paperwork, which is quite extensive to see if they will accept your self referral? That way you have that going on in the background whilst you wait to see what is of offer in terms of adult assessment in Denmark. And if you find it hard to get referred in Denmark or to a centre well equipped at assessing women and complicated cases, you have this option instead.

After all London is only a short flight out of kastrup and it would all be done in a day. I felt very confident with the Lorna wing centre. They were extremely experienced and professional. They had a lot of international cases. Reckon a private adult diagnosis is about 2000 gbp.

Next thing I guess is wondering what happens next. Is there going to be any actual support available to you or is it just the case that you, yourself, have to take these limits into account as you move forward? You planning your own support. I am sorry, I don't want to sound pessimistic but just realistic regarding the level of support available for adults with autism.

I am in a somewhat similar position to you. My child is diagnosed with autism. In that process I figured out I have many traits. Like you suggest the sensory issues and social overload have become increasingly challenging with age. I also have a good education but feel, very much like you, that I am surprised I couldn't do more.... but early on I realised that spreading myself too thin was detrimental to my overall general health and that I needed lots of alone time and quiet time to operate well. I have been lucky in being able to stay at home with my kids and focus on that. When I start working again I will try to look for part time work or work that doesn't make me have to juggle too much. I also limit the amount of time I spend being social as that is a big drain. These are limits I realise I need to impose on my life for me to function at my best. Now, I realise not everyone has these options but are there ways in which you can try to simplify your life?

Hi,

I agree with both elsapelsa and ASPartOfMe that my knowledge in this area affects the process.

The fact that my profile is 'complicated' is the reason why I think I should be seen at this particular clinic, as they take in more complicated cases and offer both help, understanding and a sufficient description of needs, once they've done the assessment. But I think my doctor needs to describe my difficulties more clearly; and I think I need to describe them plainly, directly and honestly to her. It isn't that I was dishonest the first time, and certainly not intending to be, but I do find it hard to open up about these things.

It's funny that you should mention the Lorna Wing clinic. I did visit back in 2008 as part of a field trip with my job at the time and found the atmosphere really nice and inviting. I think, however, in terms of support, that I will be better off with an assessment from a Danish clinic. I believe that my current level of functioning can be described more thoroughly to my doctor and I do hope this will make the hospital clinic take me in.

And yes, simplifying my life is massively needed. One of the reasons for my current stress levels is that I'm trying to train myself to be able to run a home - while also being self-employed. With some tasks at work being like joyful play, and others putting tremendous strain on me executive functions to an extent that have me skip (or postpone) things like writing invoices, keeping track of expenses and so on.

There is some hope that an assessment would entitle me to at least some help but I also think that the whole process of being seen and confirmed in things I find more difficult than most will help me accept limitations similar to the way you describe it.

Yes, if there is support after assessment in Denmark, that makes a lot of sense.

I would say just be careful as you start to analyse this as lots of things can unravel. I found as I noticed more and more things about myself and my coping strategies, there was a period where I was so aware of everything that the coping strategies didn't work as well as they normally do when they were just instinctual and unconscious.

Being Danish, do you know Anne wibeke Fleischer? I love her books! If you know her, say thanks from me! Her book on executive functioning gave me loads of parenting ideas for my daughter.

Good luck going forward. Hope you get good answers and good support.

Hi,

I don't know her personally but I do know her name and have, many years ago, read one of her books. I may want to re-read her, given your recommendation!

I think I know what you mean by analysing everything, and I can see how in some contexts I function at a lower level once I become more aware. However, this may also be a route to better social self-care. I hope that I can begin to protect myself and my, at present, sparse resources by, e.g.
- choosing to engage less in eye contacts
- not suppressing stimming, humming
- caring a little less about 'whose turn it is' in conversations etc.

I wouldn't say my coping strategies are instinctual but I think I do employ quite rapidly and per default. To become more aware can pose difficulties, but maybe also give me more of a choice? At least that's what I hope.

Thanks again for responding. I will post once I've seen my doctor again and, hopefully, after having been seen by the clinic.

I get this 100%. It's actually very scary how spot on you've explained it to the way I am coping in life right now.

I'm currently in the process of my assessment. I can't really offer any advice, but it seems the others have given the best you can get anyways. But i do wish you luck with it all.

Thank you so much for your good wishes! I hope the assessment will be satisfactory for you!

Hi,

How did things go for you, Jon85? I went through a very thorough diagnostic process and am now diagnosed with ASD. I'm still fighting my way out of depression. I've come quite far, but I also think I'm having some sort of emotional reaction to the diagnosis. It is somehow sinking in, that I need to find a way to live with some things being hard for the rest of my life...

Congratulations on the progress you have made.

I am always happy to read about Autistic ASD specialists. The field needs as many of us as possible.

From what I know, routines come quite naturally for aspies. I know I have no problems establishing my own little patterns and ways of doing things.

Cheers on your diagnosis! I was diagnosed last year and there have been lots of ups and downs, but in general my life has improved a lot. I went through a lot of mood swings in the beginning….I guess the system had to recalibrate somehow. The finality of a diagnosis can be daunting, but the license to be myself was liberating for me. Now I am working on some kind of balance between masking and being myself. I find it is important to have some people to be open with, and keep quiet about it to most people if one can. The reason for this is that I don't think most people have much of an idea about what a diagnosis means in practical terms, and you can only really explain it to people who care in the first place.

Best wishes!