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?

You’re not going to get a reassessment on the NHS any time soon. If you wish, you could look for a private assessment but it would be costly.
Your DD sounds like she has some quite complex issues going on and has lots of interventions from professionals. It’s highly likely that what they are saying is correct.

Thank you for replying. Yes I think a lot of it could be put down to anxiety. I got a gp appointment for next week but the lady from the assessment thinks she needs medication would you agree? X

You could look into right to choose to get a second opinion. https://www.clinical-partners.co.uk/nhs-services/right-to-choose

Anxiety medication could be worth a try, how well she responds to it could give you more of an idea if anxiety is the main issue or not?

She sounds quite similar to my DD who is 21.
My DD has GAD routed in childhood trauma. She is having therapy which is helping.

However I agree the symptoms massively overlap with autism which presents differently in girls and is harder to spot.

But not everything is autism.

Iirc an Autism diagnosis requires things on 3 specific areas. Suggest you look it up and arrange your thoughts against them and see what comes out. My DD doesn't have special interest fixations.

Best wishes.

Medication for what? You really do need to discuss this with her GP.

Ask the school - for an autism assessment the school also have to complete forms I think (?) and although girls do mask a lot in School, speak to their SENCO - they can request an assessment direct to CAMHS (or NHS service in your area).

Unfortunately they wont reassess so soon, its not a case of getting reassessed till you get the answer you want. You could try private but it is expensive and not everywhere will accept a private diagnosis.

Hi Teentotwenties, can I ask how your daughter is doing? Does she take medication? My daughter still can’t/wont take tablets only calpol. I’m so worried for her. She does have her special interest she has had the same one for about 11 years and new ones crop up every now and then. X

Thank you! I will do that when they call me back. X

Why do you think she needs medication? Medication is not always the answer…there are other ways of dealing with these diagnoses. With all due respect why do you think you know better than the professionals?

This absolutely sounds like autism and some behaviours very much like my own child, especially the rule following, shut down, loud noises, no cinema. If you’re able, see someone else, this Dr doesn’t sound like they know enough.

As for medication, that’s a choice only you can make with the paediatrician. It’s helped my child immensely.

Sounds like autism to me. Not every professional is correct in their opinion.
If it were me and my child, I would write out her daily struggles, can she do this with your help? Then go to your appointment with the information written down. Autistic Girls Network is a great resource online.
Anxiety is often a part of autism but it's different to general anxiety.
Keep pushing for an autism assessment.

Why would ASD be fine but GAD is very upsetting? The two can present in very overlapping ways. You can have many flags for one while having the other. People don’t always realise they’re anxious, but the behaviour exhibited does stem from anxiety. Because it’s so “normal” to DD she won’t think she is anxious or worried - it’s her normal way of thinking. But this is how it presents.

I would talk to your DD (and yourself) about mental health stigma and not needing something to be one diagnosis over another to make it okay. It doesn’t matter what the struggles are, because she can get help either way. Trying to force her into an ASD box when she needs GAD help will only hold her back.

People will say 'what makes you think you know better than the professionals' but diagnostic overshadowing is still really common with girls and it's important to get the right diagnosis. Girls are often misdiagnosed with GAD.

As others have said, nhs route is absolutely broken - we know this first hand as our 9yo dd is in a reallty bad place at the moment. GP can't prescribe melatonin until she's seen a specialist. Camhs won't accept her referral despite suicidal language and frequent shutdowns because she's awaiting neurodevelopmental assessment. Neurodevelopmental services can't confirm where she is on their list, nor how long it is.

Right to choose might be a quicker route, but even that is getting longer by the day. Can you afford private? Unfortunately much of the scaffolding she'll need will need to be led by you, doing your own research, implementing your own strategies etc.

Would it be helpful to you to write things down that you want the Dr to know?
If you type in or write on small cards then you can move them around until you have a logical order

There is no legal right to a second opinion. Right to choose is specifically for initial opinions. You will not get an NHS second opinion (so many people are waiting for a first one). The only way is to pay privately. I guess you could complain via PALS if you think the Dr did not perform the assessment competently but if it’s just that you disagree with their opinion it isn’t likely to be upheld.

You yourself say that the diabetes dominated her childhood. It is entirely possible that she has GAD stemming from the fear and worry engendered by the diabetes diagnosis as you describe it. Sometimes people with anxiety disorders engage in such effective avoidance (lots of this described in your post) that they don’t actually experience the anxiety very much because they have avoided triggering it.

Why would you want her to have an untreatable neurodevelopmental disorder vs a treatable mental illness? Why not try therapy and medication and see if she gets better. Wouldn’t it be a great outcome if she did and didn’t have to struggle all her life? If you try and it doesn’t work you have more evidence for a reassessment for autism.

i think you have a very complicated case and you have had input from several professionals and have not got the outcome you hoped for.

It sounds like you may have got fixated on it being ASD as you have presented an almost undeniable list of ASD symptoms that is must be ASD, eg she had her “special interest”. Hence some posters will say “it sounds like ASD to me”.

What did you hope to achieve from the ASD diagnosis?

Medication is a viable alternative.

I would push back on the doctor where they said if the school hadn't put something in their report that they couldn't consider it. This may be a misunderstanding of the idea that a difficulty must be present in multiple contacts. Some people think this means it has to be present on every report. But if you report that it happens in multiple contexts that should be valid, e.g. at home and out at the supermarket. Or if she masks at school (e.g. at assembly, school concert etc) and has a meltdown when she gets home, that's also evidence.
Having said that my son was assessed for ASD a few years ago and didn't reach the threshold for diagnosis. He was diagnosed with ADHD. When taking ADHD medication, his autism traits became much more pronounced and evident and he was recently diagnosed with ASD.
So if there is a case for it being potentially anxiety and medication being helpful, it could be worth doing it as it may help anxiety, but if ASD is there it won't go away and may even be more obvious.

I would be concerned about the doctor refusing to take into account things you say that aren't reported by school. That entirely ignores that many children will mask at school. Also there are lots of situations that children aren't exposed to (like your example of fireworks or busy traffic).

When my son was diagnosed autistic there were few concerns on the forms from school other than some eating issues and anxiety. But l was able to back up concerns with examples from other professionals, and what happened at clubs, playdates etc.

The assessment should have been multidisciplinary. Was there input from SLT or OT? Did they do an ADOS or other in person assessment tools with her? Or was it just an initial screening appointment and they've dismissed autism?

Anxiety could be a plausible diagnosis and there are many options available to support people with anxiety and improve their lives. Why not try anxiety treatments and therapies for a year or two, and come back for a reassessment if things haven’t improved

I’m afraid its very annoying as a Dr when patients have self diagnosed their illness on the internet and just come with a list of what they think will fit that. It happens all the time these days.

However if anyone on here expresses any scepticism about the rising tide of autism and ADHD diagnoses then people who have been diagnosed always say that it was done by an expert in accordance with set criteria following a thorough assessment and therefore is valid. They say that paying for an assessment doesn’t mean the Dr will diagnose as that would be unethical.

You can’t have it both ways!

If Drs are to make careful diagnoses that are valid and can be trusted and don’t just rubber stamp what people want then sometimes people will come away with a different diagnosis. If Drs are dumb, have no idea and are constantly subject to diagnostic over shadowing then how is any diagnosis worth having at all?

Since there is no treatment for autism and very little in the way of services then the only reason to have a diagnosis is validation and it’s not very validating if Drs can only ever agree with you anyway. GAD is as much a disability and would qualify for benefits and reasonable adjustments if that is your concern.

If you read the OP’s post properly you’ll see that it was the assessor who suggested medication. I expect anti-anxiety meds since she’s been given a GAD disorder.
So your response was not only rude but also incorrect.

Thank you for your advice and opinions it’s really helps. I don’t think I know more than the professionals I definitely don’t as I sound thick as pig shit trying to explain to them 😂
I think because I’ve had people telling me for years this is what it is I’ve just accepted that. I do find it hard think she has had a mental health condition since she could talk but I guess it’s possible. The doctor was very hesitant at first and said she would need to talk to another specialist as she wasn’t sure if GAD or ASD if she was more sure I think I would be more comfortable. X

This would really help me actually. Thank you for the suggestion x