Published on 12, July, 2020
Hi. I've just joined here. Long story but I've suspected my now 17 yr old is autistic for all her life. I've spoken to schools , school nurses and early help support worker about this. All of them looked at me like I was a crazy lady and because my daughter's anxiety (her main difficulty in life) has come in peaks rather than consistently bad, I've doubted myself over the years.
There's a lot more background to this including her childhood of lining toys up, not taking part in imaginative play, not giving eye contact to anyone apart from us at home and extreme andan several times every week due to issues with people or unfairness of teachers at school.
We took her out of school to Home Educate when she was 12 due to school refusal and her anger and violence disappeared.
However for the last 2yrs she's closed in on herself and although speaks to friends on the phone for several hours a day, she's developed agoraphobia in they she won't go to shops or buildings or meet with friends in real life.
She was referred but rejected from camhs twice over the years and denied any form of counseling. She is, however, currently having online counselling through The Mix counselling service for young people. She hates it though and thinks the counsellor has no idea what he's talking about.
Sorry, I've really gone off on a tangent. She won't go back to the GP now as she had so much rejection from them over the years that she doesn't see the point.
Does anyone know anywhere in Kent that do private assessments of 17yr olds? She doesn't travel hardly at all so it would need to be on the east coast of kent or in as far as Canterbury. And does anyone know what kind of price we'll be looking at? If we ever did get a diagnosis, what support would she get with her anxiety. When she's not going through a peak, she happy gets on with life but this peak has so far lasted for 2yrs. The way things are she won't be able to sit her exams or get a job as she can't be with people or go into buildings.
Sorry for the essay! Any advice on any of this would be great.
Cat x
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.
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
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 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!).