ADHD/ autism assessment refusal

[Sux2buthen]

My daughter has just been refused an assessment because the evidence from school is contradictory to evidence from home.
In short she masks her arse off from the start of the school day to the end every day and is a model pupil.
At home things are not good and getting worse.
She is 7.
What can I do now that this has been refused?

Also any tips or advice on handling violent outbursts at her siblings or me would be appreciated. Thankyou

Following with interest OP because we are in a similar boat - which route to assessment have you used?

It's frustrating but the DSM V criteria states that at least some of the symptoms must be evident in two or more settings. Additude has lots of advice https://www.additudemag.com/category/parenting-adhd-kids/

I went through the SENDCO at school. I spent hours filling in the form meticulously and honestly and because school don't see it, what she (we) are all going through means nothing.
The SENDCO at school is great and she referred it but they've refused.
A diagnosis doesn't change anything I know but I need help to help her.

Thanks. It is frustrating partly because I know they are wrong.
I need to find a next step somehow, this cannot go on.

As you are aware, girls are brilliant at masking. I find that their difficulties often become more obvious at school when they hit puberty which doesn't help you now. This is an interesting read https://www.additudemag.com/dsm-5-adhd-diagnosis-criteria-problems/

OP I sympathise. Our son is almost 7. Our life with him is extremely hard, he hurts me every day (either accidentally due to complete lack of boundaries/ awareness or on purpose due to extreme meltdowns). School think I am either batshit or useless as he's a model pupil there. They see nothing.

I have a friend who is a psychotherapist who recommended the NHS right to choose pathway, have you looked at that? I'm not sure whether there's still a requirement for them to show traits at school. I actually didn't know that - I knew it was the case for ahdh but I thought for Asd it was accepted that they could mask in certain settings. It's incredibly frustrating.

Oh just seen the link above is for ADHD not ASD. So yes, ADHD cannot be masked but that doesn't mean there isn't an alternative diagnosis that she might meet criteria for, such as ASD.

I am in this situation with my DD who is 13. Her dad is diagnosed ADHD as well!

I will probably pay privately if I need to as she is coming into GCSE's and need to get it sorted.

@Sprookjesbos You are correct about ASD - I misread the original post. However, some local authorities will only assess for ASD if children meet these criteria
"Under the new rules, children and teenagers will only be referred for an autism assessment if they meet one of six criteria, including breakdown of their education placement, risk of family breakdown and having very low levels of communication linked to autism" (The Guardian March 2023)

Due to lack of funding only the most obvious cases get referred by the school.
You can go privately though. It’s a lot, but worth it.

To handle violent outbursts, the best is to find out what your DD needs to decompress after a day of masking. It is often being alone in their own space, on screens or playing by themselves. Something that helps them self regulate.

As a child in the 70s with Autism and ADHD, I’d hop on my bike and cycle alone to the play park and go on the swings for an hour, maybe climb a tree to decompress after school.

most children need to just be left alone…no siblings, no parents, no after school activity…& not ready for homework until later.

It's really tricky when girls mask in school. Some things are harder to mask, though takes someone to observe them closely. For example, some teachers might say 'daisy has lots of friends, she's never alone at lunch', when if you observe, daisy js following the other girls, not initiating, coping what they are doing, looking unsure etc etc. daisys probably not causing any issues.

The thing is that at age 7, it's much easier to hide the social issues, less so at 9 upwards as girls become more sophisticated and select in their friendships.

Did school complete a questionnaire to support the referral or was it a letter?

Hi op. This happened to me but the school did refer her to camhs upon me breaking down to the head teacher and begging for help. They were very honest with camhs and reported no issues in school that would warrant an assessment. I however wrote a letter to her camhs person describing in vivid detail the reality of what was happening every day at home as soon as she got in. On the basis of my letter she was assessed.

Unfortunately* upon assessment they concluded dd was not autistic (well, they said she could be but they don't think she is), and one of the frustrating parts was that as part of their evidence, they cited that the school report showed nothing to suggest ASD.

4 years I have spent fighting to have someone realise dd is a master masker no find it incredibly ironic that it's well documented that girls mask the fuck out of the life and yet they insist on symptoms being obvious in school.

*I say unfortunately which sounds awful. I don't actively want my daughter to be autistic but she is very clearly neurodivergent, hasn't attended school in almost a year and we are left just flailing in the wind simply because at school she presented as ok.

ADHD can absolutely be masked.

We were referred via GP.
School knew nothing of it until I told them to expect a questionnaire about her.

Thanks for correcting me - I was told that in a training session at school (I'm a teacher) but I 100% realise there's a great deal of misinformation out there about neurodiversity. It's frustrating as a professional and a parent!

I wish I knew OP all over the place with our 9 year old who masks exceptionally well at school. I think she knows she’s masking as soon as I drop off she wants me to leave her and I see her change as she tries to fit in with her friends and like what they like.

It’s so frustrating! I suspect we will have this outcome with my dd. Our senco was great and supported the referral but said the teachers hadn’t seen any issues. I saw the school forms and they were written like a glowing school report! I do get it as they can only report on stuff they see, and with 30 children to look after they aren’t going to notice the quirks of the well-behaved, quiet, bright but probably masking girls.

I am genuinely perplexed that ADHD can be masked .

I have a diagnosis. Was one of the first Adults to be assessed at The Maudsley (kings college hospital) in 2006 at 44 years old.

The reason for asking is that I couldn't mask my symptoms if I tried . They are an integral part of my character and have been since v early childhood.

How on earth do you mask losing EVERYTHING.. from school uniform to (in my case ) a French Horn (huge) . ? To (in later life) leaving my new born son behind my parents sofa !

Completely chaotic around paperwork . As an adult that's bills, kids school stuff..
As a child , Home work half completed because distracted by 'something more interesting' ..

As an adult it means a half hoovered room because I've forgotten to pay the council tax .. etc etc .
Hyper focus. So obsessed by particular tasks that time management is shit. Be that as a child or adult.

The only way I am NOT this person - or at least a a slightly less mad version is due to Xaggartin 36 XL

None of these things could I 'choose' to cover up. Although I would have loved to.

Perhaps I am not understanding 'masking' . I am genuinely curious to know what this means with ADHD.

Make sure your local education authority will accept a private diagnosis as mine wouldn't.

I’m quite worried this will happen with us and the advice Ive been given is to try again in a year if that happens. Have you seen a copy of schools questionnaires? I asked for it and it was wuite illuminating, I could see why school had never noticed anything amiss until they really looked at her behaviour.
In terms of violent outbursts I’m still learning with this but a close awareness of what she finds too much or triggers helps - lack of sleep, change in routine, transitions. When a meltdown happens we give space; she won’t follow us if we move away but if I’m close by when she has a meltdown it can happen

I am diagnosed with ADHD and I believe you can mask as well. I also think people can accommodate their difficulties to appear mainstream.

I would lose everything except my coat, car, bag, keys, laptop case etc all have an AirTag in them which my phone can track. I don’t lose my phone because I have my watch attached to my wrist which I can use to buzz my phone. My watch is full of constant reminders which are set to notify me at the right time to be able to action them and because otherwise I won’t remember and I won’t do these things. To an outsider, I look organised as a result.

I need to fidget but I do this by twirling and crossing my toes. If I am tightly sitting under a desk, I might twirl my ankles or flap my legs. This can’t be seen so I don’t look like I fidget. If the need to fidget is greater, I might play with my hair by putting it up and taking it down again. This isn’t obvious enough to really make anyone think otherwise. If I’m on a Teams call, I will doodle out of sight.

I exercise a lot. The concentration it takes to keep still means I can’t really focus on anything else, including what people are saying. However, I learnt that teachers expect you to stay still and will tell you off for not doing so, but they roll their eyes and leave you alone if they think you are dim and can’t understand. People pleasing and wanting to conform is strong in girls with ADHD. They mask to get there.

My friends had crushes and hobbies I didn’t really understand but you wouldn’t know that because I would copy them and pretend the same. That’s also masking.

As an adult I have all kinds of extra help to be normal. Thanks for my cleaner, my house is clean. Ditto to my gardener. I’m still disorganised and chaotic in my head but I don’t come across that way. I pinch myself to distract me from interrupting conversations and have all kinds of other tactics to be normal.

Then after being sociable and looking completely normal, I’ll retreat home and curl up in bed with my cat for hours because I’m exhausted from masking.

Ime, it depends what type of ADHD you have. I have it but you wouldn’t know as on the surface I look like I have my shit together at work and to friends, apparently

It takes a huge mental and physical effort to present myself as functioning, leading to burn out, depression, anxiety etc behind the scenes. Lots of women and girls present like this, which has driven low diagnosis to date

My 7 year old masks at school (im
hoping he stops soon) He’s so scared of getting into trouble he masks until home and we get it full force.

We went via the GP because the school refused to support us (they did with with our eldest too and it took us 7 years and lockdown to get them to diagnosis which happened within a few months once we got past referral) . Partner has adhd and I am ASD, eldest child both so statistically with background and symptoms at home it’s guaranteed. GP saw textbook adhd symptoms in the surgery multiple time but the adhd team still wouldn’t accept referral.

We tried again via the GP but approached from the asd angle and he’s now on the waiting list for a full neurodvelopmental assessment (so both) but it’s going to take years and in the meantime school wont give him leeway until he has a formal diagnosis (we’re not asking for additional support teachers or awkward adjustments just a kind approach to his overly talkative behaviours). When we did this we also responded to their original rejection letter that was riddled with procedural and timeline errors and copied in our local msp (Scotland), the school and the GP.

We don’t know how long it’s going to take and I’ve posted recently about how it’s becoming more challenging for him and us at home. It helps to work as if your dc already has the diagnosis when not in school, if she’s masking in school and surviving it right now, allowing the emotional and sensory out bursts out of school can help in the short term but it’s not a long term strategy.

good luck

Have you spoken to CAMHS about the referral or has this come by letter.

Some services are applying thresholds as has already been explained. In this instance you would need to go for a private assessment.

When a referral is placed it is screened (the questionnaires) which indicates whether a full assessment is necessary.

Adhd they expect to be seen in in an educational setting. ASC does not need to go across settings.

Sometimes, especially with girls they don't meet the criteria for assessment on the screening tools but if you call and speak to a clinician on the autism pathway then they can do the assessment anyway, if they feel it is appropriate.

Hth.