AIBU to get my daughter reassessed for ASD? 

[ioveelephants]

I’ll make this as short as possible. I’m not a great writer and terrible with grammar so I’m sorry for that. My daughter 15 had her ASD conclusion last week and she was diagnosed with general anxiety disorder. The thing is she and I believe this is the wrong outcome as she doesn’t feel she is anxious.

We don’t feel that GAD explains her daily struggles but I feel it may be my
fault as the way I explain myself has confused the dr. We have a gp appointment next week and I’ll like to ask for a reassessment and was wondering if anyone had advise on this?

My daughter was diagnosed type 1 diabetic when she was 3 and that took over our life and was all we focused on for a long time. She has had selective mutism since she could talk and wouldn’t speak to anyone outside of immediate family the school didn’t hear her speak until year 4.

I have to stock pile shoes when I find a pair she will wear and swap them without her knowing as she would wear them until they are falling off her feet.
She has a strict routine she has to follow everyday 7am wake up 7.10 brush teeth 7.15 eat breakfast ect.
I have to take her to and from school as she has no awareness of danger when explaining this to the dr I also said if very busy she will shutdown and she said I was contradicting myself but what I was trying to say was she doesn’t do well in busy places but it’s come across wrong.
She isn’t able to make friends but has a girl at school she hangs around with I think this girl struggles too. She wants to make friends but she can’t make chit chat I’ve gave her advise on how to speak with people and she can say hey, how are you? But isn’t able to keep a conversation going so it ends there.

She isn’t good with loud noises so struggles with fireworks night, cinemas and crowded shopping centres. But the dr said the school hasn’t put that on their report so she can’t take it into consideration.
I have to plan days out so she will have alone time or chill out time somewhere for her to recharge her batteries as she gets overwhelmed. She doesn’t have meltdowns or maybe she does but just in a different way she will shutdown and go silent when overwhelmed. She isn’t naughty in fact the total opposite she is a little rule follow and can’t understand anyone that won’t follows rules.

I think I’ve really messed everything up for her as you can see from my post I jump all over the place. When the dr was asking questions which was based on when she was very little I just couldn’t remember everything like what she would say when playing with toys ect when I think back to when she was little I just think of her diabetes everything was focused on that.
I’ve spoken with the hospital team they told me to get a go appointment and get her reassessed. The dietician has written me a report based on her eating habits.
I waiting to her back from the school and I’ve contacted her primary school to see if I can get any reports from then as she did have lots of professional in to work with her.

She is very upset about the general anxiety disorder diagnosis which I’ve been shock at as she doesn’t usually show much emotion but I feel terrible for her.
Please if anyone has any advise or has been through this please could you help me?

I actually think you explained yourself quite well in the post, and you give a good picture of your daughter. She also sounds very anxious, even if she doesn't feel it as anxiety: not speaking at school, having to stick to a strict routine, always wanting to follow rules. Most autistic people are very anxious because ordinary life triggers their nervous system and they're in fight/flight/freeze relatively frequently.

Has the dr diagnosing suggested medication? This may help, even if she is autistic, so don't decline it straight off.

Did she do the ADOS assessment? If so, you should get a detailed written report and that might explain why the Dr doesn't think she is autistic. If they didn't do this, I would press for this.

I don’t know. I was asking the lady but wasn’t getting much out of her it felt like we were going around in circles she wasn’t answering me. Yes I will speak with the gp about it though. I’ve spent the week googling GAD and I think anti depression tablets but not sure. X

Your posts give the impression that you yourself are extremely anxious, with your thoughts racing. That is understandable, but it does feel like you might need to step back for a moment and think about why you are considering seeking reassessment.

If one assessment says no to ASD and another says yes, then the likelihood is that (a) her condition is very borderline and (b) she has other factors in her life that provide an equally helpful framing for her challenges.

What do you hope to gain from a diagnosis that prioritises ASD over GAD? What would change? Whichever framing of the same symptoms is given priority, anxiety management is likely to be a central part of helping your daughter to be happy.

Why is a diagnosis of GAD more distressing to you than one of ASD? Could it be that the persisting stigma around mental health issues, taken together with the more 'positive' current discourse around ASD, leads you to think of the latter diagnosis as more validating than the former -- as if it were somehow a solution in and of itself?

Yes, the most likely meds for GAD would be anti-depressants, which can be as effective (if not more) for anxiety as they are for depression

Good morning, I just seen you’re a doctor. Can ask will she get better if it’s GAD? I didn’t really want to do the ASD assessment as she already has diabetes I don’t want her having all these labels attached to her, but she asked for it as she thinks it describes her struggles. I think she is perfect and wouldn’t change a thing about her personally. I’m not bothered about benefits I just want to make sure she feels heard and seen. She spent most of her life invisible and it breaks my heart. X

This sounds a bit like my DD, but more extreme. She is diagnosed with GAD and on fluoxetine, which has been helpful. She is less anxious and depressed since starting it. We have also been told that she is probably autistic (I’m certain she is) but that she probably wouldn’t meet the current criteria for diagnosis. I think this is common in girls, especially since there is so much overlap between anxiety and the female presentation of autism.

However in our case treating the anxiety has been hugely beneficial for the whole picture, so I wouldn’t discount any treatment they offer at this point (counselling etc wasn’t effective for my DD, only the eventual meds).

I think it’s extremely unlikely you will get her reassessed just after having the outcome of an assessment. I would consider that her GAD diagnosis is actually accurate, a lot of the behaviours you mention are about controlling things because of anxiety. She/you might not know it, she might not ‘feel’ anxious and autism doesn’t have to be the root cause of this anxiety. I would take this positively and work with her to help, not fight back and be annoyed she don’t get an autism diagnosis, why would she want one anyway? Is she influenced on TikTok?

Thank you. I’m glad it’s helped your daughter so it give me hope! To the lady saying how would a diagnosis change anything? You’re right it wouldn’t change anything I think it would just validate how she feels. I just dunno. I guess I feel terrible that she has possibly had a mental health issue all her life and I haven’t noticed. X

I dont think you are unreasonable, but just a thought, asd and anxiety are often comorbid. During our diagnosis process we were told they are sister diagnosis.

One idea would be to treat the anxiety with anti depressants and changes to the environment and see what happens. often then is you can 'see' the autism more (if its there)

So you can tgeb demonstrate that the anxiety is now well managed by environment and medication but there is still something going on.

My ds got both diagnosed together and was treated for anxiety and it was really interesting seeing what was left once the anxiety was well managed. It was clearly autism!

Thank you this is helpful ❤️ I’m glad your ds is feeling better. I will try this. X

she asked for it as she thinks it describes her struggles

This seems a really important piece of info. As a teenager she is naturally likely to be influenced by all the social media trends around autism. At that age we are naturally seeking for a sense of who we are, and unfortunately the pragmatic business of diagnosing health problems has got horribly caught up with these sorts of existential concerns.

The school and hospital had been encouraging it for years but it didn’t seem necessary to be honest. It wasn’t until she started secondary school and she still hadn’t developed her motor skills that it became very obvious as she can’t catch a ball, tie her shoe lace or do her buttons up that she was behide the other children and struggling. It hasn’t come from social media. X

It is definitely worth checking that diagnostic guidelines have been followed though. What op described sounds more like a screening appointment than an actual assessment.

Who diagnosed her?

We went to see a Paediatric Neurologist privately.

DS was referred to see him anyway by our GP but his waiting list was very long and so I rang his secretary and she suggested we go private as it’s much quicker. We paid €750 and got a cancellation appointment within 3 weeks. DS saw him for 3 appointments in total
(This is in Ireland.)

The best money I ever spent!

Once the school received the letter with his formal diagnosis and a list of recommendations, they were completely on board and have been extremely supportive. It’s made a massive difference to DS who had started to self harm from the stress of school.

Is there a private referral option open to you?

Did they do ADOS?

My DD (trauma based GAD see above) has propranolol for anxiety and fluoxetine for depression.
You can't get fluoxetine under 18 without a clinical psychiatrist (so via CAMHS or private). She was in a bad way at the time, pandemic years and didn't return to school.

By having meds she was able to engage in therapy.

But it is important to know what you are dealing with i think.

The correct diagnosis could change her life and future for the better. Whether its autism or GAD, its so much more than a label.

GAD is often treatable (maybe not a complete cure but substantial improvement) with an SSRI such as fluoxetine and CBT. Instead of asking your GP for a reassessment for autism ask for a CAMH referral for the GAD. She will then see a psychiatrist and a psychologist anyway and you will have a 2nd opinion by default.

Sounds like an excellent suggestion.

The motor issues are dyspraxia though aren’t they which is not part of ASD criteria. It’s a separate condition that you can have without autism.

That is great advice thank you so much ❤️

I didn’t know this. Thank you xx

If it was through CAMHS you need to wait 12 months for reassessment anyway.

my daughter did not meet ASD threshold despite her adhd assessor and MH lead at school convinced she is. They mentioned it can be an issue for girls where the scoring alone does not give a true reflection of their struggles.

It’s frustrating when so many people tell us that’s what it is. Did your daughter manage to get the reassessment and help she needed in the end? X

Did she have a full assessment? As in, a long interview with you and a separate ADOS for her?