Private assessment near Kent

Thank you Trogluddite. Your replies are really helping me get my head around it all. I'm still waiting to hear back from the assessment centre but oi the budget is a possibility for us, then the next hurdle is trying to convince her to go for it. They assess for various things so I think I'll only convince her if they will give a diagnosis of something (such as an anxiety disorder) if it turns out she's not autistic. Because she needs a diagnosis of something to have any furt of possibil chance of support in adult life (although in our area I'm not holding our breath on that either!).

NAS63837 said:

If she was autistic wouldn't she feel that she's masking? Wouldn't she know? 

My own experience is that it is quite possible to have no idea that we're doing it - my own awareness of doing it didn't really hit me until my early twenties when adult responsibilities brought it into focus

By definition, autism is something which is present from birth and, especially as children, we have no idea that the other people around us don't use the same kind of mental processes that we do. Masking seems "normal" because we assume that everyone else must be doing it too. Like everyone, we can only judge another person's personality from the behaviour that they show on the outside, so we can likewise feel that since everyone else judges our personality from our behaviour, this must be our true self.

There's also an obvious incentive to believe that our true self is the one which results in greater social success; we don't want to identify ourselves with the autistic behaviours which result in negative outcomes - rather like the way that an embarrassed drunk will say that they were "not really themself" when alcohol reveals part of their personality which they dislike.

It's a complex issue, and I certainly don't know your daughter well enough to say for sure, but it is possible that she has internalised masking to the point of accepting it as her true personality. Many older adults describe feeling confused about their identity following their diagnosis, because the "self" who is only reacting to other people's expectations, but has few internal motivations, is the only one they have ever accepted.

That's interesting. My daughter and I are VERY close and we talk at length about get anxiety and the possibility of her being autistic. She doesn't for one second think she is. She is adamant she doesn't make her behaviour and truly believes that her non anxious times is her normal behaviour and the anxious tints just hit for no reason. This is also what makes me doubt sometimes. When she wasn't retreating, she was always very popular at school and is adamant she's never felt different to anyone else until the anxiety hits. It always starts as a physical "not week" feeling in her tummy which describes as a "eurggghh" feeling and motions scrunching up with her hands around her stomach area. She said it's absolutely NOT nerves as that feels very different. But she can't describe it. She has and always had had a fear of feeling/being sick so this feeling in her tummy riskyto freaks her out. 

However, from my side, I see that while she attended school she was a permanently angry child. At least 3 out of the 5 days every single week she'd come home totally wired and angry and we'd have hours of shouting/screaming/crying for no apparent reason. Eventually we learnt that it happened when something unfair had happened at school or someone had annoyed her. Since leaving school to be Home Educated at age 13 (she'd not attend school for six months due to agoraphobia) her anger disappeared completely and we've not seen it since so although her agoraphobia isn't constant, the anxiety obviously was while attending school. 

It's her belief that she feels her "normal" is not feeling anxious that makes me doubt my thoughts. If she was autistic wouldn't she feel that she's masking? Wouldn't she know? 

NAS63837 said:

I sometimes think I'm imagining it (when she's not suffering so intensely with her anxiety)

That's probably what she wants you (and everyone else) to think!..

It sounds like she's become pretty good at masking - outwardly showing what she's learned is the expected behaviour for the situations she finds herself in; maybe even when she doesn't know quite why the behaviour is expected. This has a useful side; we're more likely to be accepted by the non-autistic people around us, attract less bullying, etc. And it also has a down-side; it is extremely exhausting mentally to be second-guessing our instincts and suppressing our natural behaviours all the time. Eventually we can become so worn out by it that we can't keep the mask in place any more, and so our autistic behaviours become more prominent. The autism hasn't regressed, it's just less well hidden.

This is often what leads to the kind of isolating behaviour that you've mentioned. If we feel that we can't keep the mask in place, going out into the world can feel like we're going into outer space without a space-suit. We can feel very exposed, because we're paranoid that our autistic behaviour might "leak out" and get us into bother. This is particularly true, I think, for teenagers and young adults, as our peers, and all of their social behaviours, are going through a lot of changes, which can feel very hard for us to keep up with - just as we think we've mastered one set of social rules, up pops another!

One of the most important lessons for us to learn is that masking is just a coping strategy which can be very useful sometimes, but not worth the cost at others; and that we have a choice in where, when, with whom, and how much we do it. It's easy for us to believe that it's something we're always obliged to do and that we're a bad person, or will automatically fail at something, if we don't. This is definitely an area where a counsellor must be very careful; for most patients, a return to "normal" behaviour is the expected goal, but for autistic patients, that can unintentionally reinforce the idea that the autistic self must always be suppressed.

Thank you both for your replies. Trogladdite, it is reassuring to hear from someone with first hand experience of autism and that you recognise things I've said about my daughter. I sometimes think I'm imagining it (when she's not suffering so intensely with her anxiety). 

Kerri, thank you for the links and I have now been in contact with an assessment centre near me asking for pricing details. I know it's not going to be cheap but I'm hoping it will be something we can afford to do at some point.

Cat

Welcome to the forum.

I don't know enough to be able to answer your main question, but there were a couple of things you said which struck me; in particular her reticence about doctors and counsellors.

This is a very common feeling among autistic people because, sadly, there are very few front-line care staff who have sufficient understand of autism. Her impression that the "counsellor has no idea what he's talking about" is one which is echoed by many autistic people who've tried counselling. Some of us, including myself, have found that with some counsellors it can even be counter-productive; just reinforcing how "different" we feel because they incorrectly look for psychological causes for problems which are really perceptual and cognitive in their origins. This isn't to say that counselling can't be helpful; it certainly can be; but in my experience, it is far more effective with a counsellor who really knows what they're dealing with (I was fortunate to see, quite by chance, a counsellor who had previously worked with autistic people, and the difference between her and the previous counsellors that I'd seen was immense.)

Although she may be a frightened of it at first, she might find that going through an assessment helps her with this - it can be a huge revelation to speak with experts who take what you're saying seriously and are able to demonstrate that they really do understand. I also wonder whether you or her have considered forums like this one. Naturally, you may want to lurk around a few of them to find one which you consider suitable for her (some have areas set aside for adolescents), but just talking to other people on line who recognise your experiences can really help with the feeling that you're suffering all alone with problems which no-one else understands. It's something that has benefited me more than all of the medications and formal talking therapies I've had in the past put together.

Best wishes to you and your daughter.

Dear NAS63837,

It is, of course, very important that you see someone with experience of autism spectrum disorders. You can search for details of private diagnostic services in your area on our Autism Services Directory: 

https://www.autism.org.uk/directory.aspx

You might also like to look at the information on this page about the NAS diagnostic services: https://www.autism.org.uk/services/diagnosis.aspx.  There is a centre in Bromley, Kent but the may be too far for you to travel.

If you would like to contact our Autism Helpline team they can also provide you with information and advice . You can contact the team via telephone on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm). Please note that the Helpline is often very busy and it may take a couple of attempts before you get through to speak to an advisor. Alternatively, should you prefer to send a message, you can do so via their webform:

https://www.autism.org.uk/services/helplines/main/questions.aspx

I hope that helps.

Kind regards,

Kerri-Mod