Our daughter has recently been diagnosed as ASD, probably Aspergers at the age of 16.
We never suspected this and it came as a complete surprise when a counsellor our daughter was seeing suggested she might be on the spectrum.
I've worked with children on the spectrum and didn't for one minute consider my child might be ASD.
Went through CAMHS process, convinced that at most they would say she had autistic traits however they offered her a diagnosis.
I find myself questioning how we got to this position and feeling the need to justify the diagnosis to people I know.
Anyone else felt like this?
I do not have children myself but am a 45 year old female who was diagnosed at 43 (I also have adhd). I think many people would not have considered autism for me (because in those days and even now many people do not know what to look for). I have empathy, am sociable and interested in other people, look people in the eye. I react appropriately in "official situations". (However I had a rough time at school and suffered a lot, even though I'm not sure how much adults around me realised to what extent I was suffering).I notice in circles of females who were diagnosed late (I mean far in adulthood) that it is typical for themselves to be unsure whether to disclose (for fear of the reaction: you do not look autistic, we all are a little bit autistic, it is a hype, what ever makes you happy...). It is often difficult to justify the diagnosis to myself let alone to others. And yet, it is such a relief to know and to be able to relax a bit. Instead of stubbornly struggling day in day out, beating myself up about social gaffes, fearing judgment, trying to please everyone and coming home alone and having no energy for my own life.
I read my story is typical of "high functioning ASD women" who seem to have a job and function but then around 40 something happens, a few stitches come undone and then they plummet into a serious burnout and their life kind of unravels. I feel very sorry I didn't know at a younger age and I think it must be really positive for one's self image to know: "oh I'm just wired differently", "oh, I feel very tired after social occasions, not because I am stupid, useless and no-one likes me" but because I am hypersensitive to overstimulation, because I process information differently, because I have trouble with structure or theory of mind or central cohesion (all interesting stuff). ASD is a spectrum - and not a two-dimensional one at that - there are so many parameters and people can be so so so different and have totally opposite strengths and challenges on that spectrum (visually hypersensitive - visually hyposensitve,good at maths - bad at maths, verbal - non verbal, spatial insight - no spatial insight, etc etc etc)
My life is so much better now I know more about my own needs: at social occasions I need to take more of a back seat and try less hard. I need to go outside, even when I'm having fun and take a break. I need to write things down and structure stuff. I need to be kind to myself and not compare myself to those efficient, energetic people and their expectations of me. I know even though it seems stupid- that I can halve my stress by making minute by minute schedules of what lies ahead (like a minute by minute overview of leaving the house for something new).
So I think in stead of saying to your friends/family/etc "my daughter is autistic" it can be helpful not to focus on the lable but what on what your daughter's needs are: my daughter gets overwhelmed easily and needs breaks alone. My daughter can't stay in noisy surroundings for long, that's why she is in her room for a bit now and that's fine. And time off (like the need for recuperation days etc). She has a "sensory processing disorder" might also make more sense to certain people.
Also, I found it very helpful to read (in a Flemish book) that an autism specialist wrote that the severity of autism should be judged not from the outside manifestations but from the internal experience of the person with ASD. People who are intelligent and socially aware are very good at hiding their social deficits but this actually may actually increase stress and suffering.
In the past people thought mainly boys were autistic and if girls were they usually were more severely autistic. The girls who now are diagnosed with ASD1 (this might have been an aspergers diagnosis previously) usually slipped the net. Because autism in girls can present very very differently.
It must be very strange for you having your daughter diagnosed with ASD when you weren't expecting it. And especially hard too that you can't just tell people for fear of all of the kind of reactions unknowing people have. On the other hand there surely must be a reason your daughter has this diagnosis - and I guess the challenge will be trying to figure out her personal unique manual of how she can be happier and more relaxed and proud of herself and her talents. How she can be mild and kind towards herself with regard to the issues she struggles with so it doesn't affect her self esteem too much? Good luck with all!!!!!
Thank you for your lovely, thoughtful response. Your right, there are reasons for my daughters diagnosis and it certainly explains some of the things she finds difficult and also areas she excels in. It also helps the way that we communicate with her and means we are more understanding and more able to listen effectively to what she's telling us.
I'm confident its much better for her to know this now and have a better understanding of herself.
Procrastinator put it so well, and I can relate to much of what she says. Good on you that you are able to view your daughter's diagnosis in a positive light. I didn't get diagnosed until I was 46 and for sure there are many things that I would have done differently had I known earlier, so I would say it's a good thing she has this information much earlier on in her life. It will help her (and you) to make informed choices about important stuff, like what sort of further education would be best for her, if that's a route she wants to go down, and what sort of career would she be suited to, and importantly would provide her with an environment in which she can thrive.
As far as it coming as a complete surprise, I would guess my mother felt much as you did when I told her. Looking back, it's daft really. She even used to say that it was a shame I didn't get to know my grandfather better (her father) because we are "so alike" she thought we would have really got on well ..... and he had Asperger's too :-)
This sounds so much like the position we are in!
Our daughter was diagnosed with ASD (would have been Aspergers if our county still used that) a few weeks before her 16th birthday. The referral came from CAMHS because she wasn't responding to CBT; she had been experiencing extreme anxieties for three or four years which is why she was under CAMHS. We had not noticed any traits; the things that were highlighted on her assessment were just things about her such as her advanced vocabulary (all our kids have advanced vocabulary; I am a teacher and believe in encouraging good word choice). Since her diagnosis (just over a year ago), some traits have become more obvious but we have wondered if that's because she thinks she ought to be acting in a certain way.
We are more worried that her diagnosis has been used to justify her anxieties and that we've been told there isn't really anything that can be done about them as they're due to ASD; it seems like a cop out! We have told very few people about her diagnosis as we had quite a few bad responses when we were only aware of her anxiety problems; people telling us that she needed to just get on with things, grow up, not be pandered to ... I am sure you know the sort of thing! I don't want any extra negativity thrown at her as a result of her diagnosis. Having said that, she knows her diagnosis and she knows that she can tell whoever she wants; it's all about her, after all.
It's just a thought, having ASD myself, but perhaps the fact that your daughter's traits have become more obvious since her diagnosis is a good sign. It may be that, with her new diagnosis, she's starting to feel more comfortable being herself. Perhaps 'masking' less than she used to feel she had to. If this is the case, those times she's able to relax more and be herself could be helping to ease some of her anxieties.
Hi my daughter was also diagnosed just after her 16th birthday whilst an inpatient for anorexia. Before the anorexia she had always had anxieties but it never occurred to me she had ASD. However, since the diagnosis I have noticed more classic ASD traits and I sense it has come as a relief to her that she can now just be herself without having to try and mimic all the social 'rules'. Retrospectively I can see the traits of ASD in my daughter but we have no experience of ASD and I suspect our vision would be clouded by the stereotypical image of autism so wouldn't recognise the subtler traits. What I'm trying to say is that although our daughter had anxieties and was stubborn beyond belief to us she was just our lovely stubborn and complex, quirky daughter. That is still the case obviously as we love her unconditionally but the ASD explains so many things (not least her anorexia, which has seen her admitted as an inpatient for 17 months) and the diagnosis has enabled us to get additional help for at college and also changed the way her medical team are treating her anorexia.
Until my daughter entered her teenage years she coped very well. She probably relied on her one very close friend to help her negotiate social situations, which aren't so complex as young children. When she moved to secondary school and all the other girls hit puberty my daughter got left behind. She just didn't get she everyone was suddenly interested in clothes, makeup and boys. She had no interest in what the other teens did and couldn't follow the complicated teenage relationships. She crashed massively with a severe eating disorder.
The message I'm teething to convey though is that for us the diagnosis is a positive thing (my daughter has readily accepted it). It has enabled us to understand her better and modify how we approach things. Although she is still fighting anorexia in the long run I think it will help her understand how she got to this point and how to deal with this in the future. I am trying to look forward to a better future for her now she has this diagnosis. A label is just a label but if it means being able to access additional help then it can only be positive. You do have to disclose the diagnosis to anyone if you don't want to. Best wishes.
Hello Eleanor, it certainly seems as though the teenage years highlight the difficulties for girls (and may boys) on the spectrum. My daughter also struggles to understand her peers interest in clothes and make up, and fails to grasp why they take so long to get ready.
I'm glad your daughter is getting support and gaining understanding of herself. Like you, we have altered some of our interactions with our daughter and this has definitely helped.
I've spoken to another parent today who feels that as they come through the teenage years, things get better.
Best wishes x