Diagnosis of HFA - how did you feel?

[Blossom4538]

We have finally received a diagnosis! I have mixed feelings of relief and also wondering if correct diagnosis and she actually is! They keep on saying “complex or unusual profile, however girls can present differently”.

I’m not in denial, just either way would have felt funny I guess. Frustrated with no (or kid previous inconclusive diagnosis) and then worried that a confirmation of ASC is accurate. Is this a normal way to feel?! 😬

I have been considering an EHCP due to high levels of anxiety, needing a lot of support and guidance at school, noise sensitivity, not always being able to talk to voice concerns or when stuck and not reaching her potential academically. Does an EHCP make much difference? She does get good support but I would like to ensure this continues or perhaps she gets more as the work pressures ramp up and friendships mature.

Well I have definitely gone through periods of the same. I think in my case it is a mix of denial (still hoping her life can be simpler than an autistic life is likely to be!) and mixed up with my own questions about myself. If she is autistic then autistic is not what I thought it was, and given we have so many of the same traits does that mean I am autistic too? Which would be wonderful, because I have had, after not very happy (but fine) childhood and teenage years, a very happy life - so if I am autistic then that is an indication that she can have a very happy life too. But then how can I really be autistic if I don't have those challenges (only mild sensory issues, nothing I'd class as a meltdown as an adult)? But then she doesn't have them either (so far) so ... hmm...

I was surprised how much her Dx set off all these feelings again, despite the fact that her report was very nice, with lots about her strengths, and that we'd been told about a year before that this was a very likely outcome. So I couldn't really say it was a shock.

I think where I am coming to is a point that says her Dx is a decent summary of the things she finds hard. And as such, it can help the way we parent her and the way her teachers teach her, and in time maybe the way she understands herself.

We are a bit of a guinea pig generation I think with all these girls being picked up who never would have been before. And maybe some of them will say the "label" was unhelpful and they wish they hadn't been Dx'd. But all we know for now is that there are a lot of young women being diagnosed in teenage years or later saying that it made their life better, helped them to understand themselves, and that they wish they'd been diagnosed earlier. So for now I have to stand on the side of saying Dx is helpful and we will try to use it as a tool, to help us support DD the right way, and not as a box, to constrain our expectations or hopes for her (or her own, as she gets older). So even if the pendulum swung back, and they decided that our girls are not "autistic enough" to be autistic any more, wouldn't that knowledge still be helpful and still guide us as parents and her teachers in helpful ways? I hope so.

I'm afraid I can't help on EHCP as we also don't have one (just starting school and she's coped fine with nursery, but obviously school is a different beast). Watching with interest to see what others say!

My dd (11) was diagnosed 2 weeks ago and I can really relate to what you’re saying.

It was no surprise when we received the diagnosis so my first reaction was relief. Relief that we could start to understand her more and that she can undersatnd herself more. Relief also that her behaviour wasn’t anything she had control over and also that it wasn’t anything we’d done wrong!

Then I started to wobble and worry about what her future might hold.

Then after an amazing week on holiday with her (first one without any meltdowns I think) I started to wonder if she really did warrant a diagnosis especially as she’s SO looking forward to starting secondary school next week too.

I’m waiting for the report to come through so I’m just reminding myself that two clinical psychologists agreed on the diagnosis and apparently she scored way above the threshold.

I guess it’s just going to take some time to adjust.

Blossom - how old is your DD ? Mine is 12. She also has inattentive Adhd and I suspect possibly dyslexia as she struggles with writing thoughts down on paper.

Her biggest problem is socializing with peers. She can talk to them if she has to for example when it's a requirement during lessons at school but eats lunch on her own as she's not interested in talking to others she just wants to focus on her sandwiches!

I would say apply for the ECHP. It will make school aware of your daughter's difficulties and they should put the appropriate strategies in place. Whether this be extra help in the classroom or looking out for her pastoral needs. Some people say schools should do this anyway, maybe some/ a lot of schools do but if there are a lot of children with extra needs your DD may get lost amongst them especially as she progresses through the school years.

Sometimes I wonder if DD got the correct diagnosis probably because her other difficulties have come to light since and other diagnosis's overlap but she is definitely different - I guess time will tell. Like Light says our girls are the first generation to go through diagnosis at an early age. My DD was diagnosed at 3 and I still feel like this all these years later!

I know of girls who have had breakdowns during early teenage years due to late diagnosis and no support. I think this is heartbreaking and one of the reasons I pursued diagnosis for my DD. I hope I have done the right thing by her.

Good luck with everything.