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.