Refused an assessment ASD and ADHD

[Mumofthebrood]

My daughter is 9, masks very well hut is burning out. She has been high needs since birth, Always been sensitive to thing like labels, clothes, socks, shoes on the right way, lining things up, toys being put in the right place, lines, etc. She's also highly intelligent. She taught herself to read at nursery, she creates maths problems for herself, etc. She also has epic meltdowns at home and tells me she struggles to be "at school child" and it males her so tired. At home , she meltdowns daily for hours at a time. She cannot cope with much. She fixated on Minecraft constantly. Her behaviour is getting worse and her mental health is plummeting.
I got a letter through this morning saying unless she refuses school, her education suffers or her teachers notice a change, the nothing I can do. Think is, her assistant head agrees... she'd never miss school or have a meltdown at school because she's high functioning abd incredibly intelligent. She masks so well. Too well!.
What can i do?
Sorry for all the typos, I have a poorly baby on me xx

The
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@Soontobe60 If you are a SENCO I expect you know about the problems around unfounded FII accusations often being made inappropriately. Cerebra released an excellent report recently about this, here.

I would start saving for a private assessment.

I think SENCOs should have to undergo a screening assessment of unconscious bias and core values. The amount of obstructive SENCOs I've met, both as a parent and a governor, is shocking.

It took until DD1 was 11 to be dx with ASD, despite school refusal starting in year 1. She's now 16 and can't cope with formal education so she has to have an EOTAS package. That may have been avoided if schools had listened instead of deciding she was 'fine'.

Yes that's is what is incredibly, incredibly frustrating!! Both my primary aged DC don't display symptoms at school. CAMHS only interested if the symptoms are present in at least two settings 🤷🏻 in the meantime we have children having meltdowns at home. Wtf are parents supposed to do?!?

Private assessments are not supported by all local authorities. Especially in Scotland!

@Lougle "She can't be left at home alone at all (18 years old next week). She needs assistance with washing. She can't prepare food independently. I could go on."

Sorry, don't think my first post is clear, what you've described is very obviously high needs despite verbal abilities and continence. Not necessarily about OP's DD but I am (personally) a bit concerned that children attending mainstream school every day, verbal abilities to the point they can make themselves understood to a layperson, no additional personal care needs, meltdowns but at home with no violence or self harm, can access the community most of the time being described as "high needs" does everyone an injustice (including the child in question). I have seen it quite a lot.

However, I should have made first post clearer that it's not all about nappies and being non verbal. I worry about my child who can speak and use the toilet a lot more than my one who can't.

We saw gp last week about our ds behavioural problems. Have an appointment with Camhs in January. We asked about a private assessment but were told it isn’t possible for this? How/ where do you go for private assessment?
Really hoping it isn’t Autism and just linked to puberty, but I had a close relative with Autism so I’m concerned it’s been passed on. Feeling very worried.

This is such a good point. I've seen the 'naughty vs needy' bias in action in SENCOs and other professionals.

In England at least, it is unlawful for LAs to have a blanket policy of refusing to accept independent assessments. And SENDIST considers all evidence.

I too don’t always think “high needs” is always used appropriately. I think what is often meant is this child needs so much more support than the average child to manage normal life. Objectively compared to “high needs” seen in the disabled population they have very low needs.

I’d be very observant of what school see as managing. Your child is “fine” often means your child doesn’t cause extra work for school. Is she reaching her potential and if not what would help.

I’m surprised that is legal. A diagnosis doesn’t necessarily lead to any funding or support though.

Some resources you and dd might find helpful OP:
https://autisticgirlsnetwork.org/

https://www.pdasociety.org.uk/

https://thegirlwiththecurlyhair.co.uk/

Books:
The Explosive Child Ross Greene

The Autism Discussion Page- a series of books based on posts from The Autism Discussion Page Facebook group- if you’re on Facebook it is definitely worth following them.

My Hidden Chimp- by the Author of The Chimp Paradox. I’ve found this really helpful to read with my 10 year old and we talk about his chimp when he starts getting dysregulated about something to try and de-escalate. It’s a work in progress!

My son also really liked reading Can You See Me? Which is a fictionalisation of a girl’s life living with autism. It is co written by the girl the character is based on (who is autistic) and a children’s author. There are other books in the series too but he hasn’t read them yet.

As school are supportive I would ask them to put strategies/adjustments in place as if she is autistic. What each child needs is different but there are lots of things to try. Hopefully that will allow her to unmask at least a little bit at school and hopefully help the explosions at home. I would also ask if they could organise an Educational Psychology assessment for her. As I mentioned in my previous post, a report from Ed Psych is one of the things our local pathway will consider as evidence aside from school.

This website explains masking and what’s known as The Coke Bottle Effect

https://www.theautismpage.com/girls/#:~:text=The%20Coke%20Bottle%20Effect&text=Social%20interaction%20takes%20a%20lot,second%20they%20enter%20the%20house

Lastly, if she attends any other settings where she struggles or where adults have noticed difficulties this can also be used as evidence of possible ASD. It doesn’t have to just be school.

Only - she obviously does?

Yes SausagePastaForTea - I totally get that. Sometimes you need that but of paper, some people are confident enough to forgo it. I don't know, it's a lot of money when there's nothing practical at the end of it. But yes, just knowing can be invaluable.

Singleandproud - yes get that too. I'm angry we have to make these choices and I'm angry at the ignorance/ arrogance we have to deal with in those who navigate life with an utter blind spot to their own deficiencies. They pop up on every one of these threads.

Healthcare is devolved. Scotland make their own laws on heath.

No she doesn’t obviously fit the criteria it makes a complete mockery of the diagnostic process when people think they can dx over the internet based on a lay person’s observation. Not being autistic or not having ADHD doesn’t mean this child doesn’t have significant difficulties and need much more support. What it means is she doesn’t have those very niche diagnosis. Being outraged and furious that a GP who doesn’t feel a child is likely to receive that dx doesn’t order a barrage of assessments is ridiculous. You would be furious if every person with an upset stomach was being put in the waiting list for an endoscopy.

A couple of things...

Be aware that if you have a private assessment and medication is recommended this would have to be paid privately until they reached the top of the CAMHS medication waiting list. As I've said in a pp CAMHS will only accept diagnostic reports that follow NICE guidelines. In my Trust we will accept these reports and put the child onto the waiting list straight away.
Unfortunately the meds waiting list is also very long. With the amount of funding and capacity we have demand massively outstrips supply. We outsource assessments when given more funds for diagnosis but then create a bottle neck further down the line when medication is indicated.

Secondly there are schools who are insisting on a diagnosis before putting help in for the child. This should not be the case. Help should be given on the needs of the child and not on whether there is an official diagnosis in place. In my opinion it is unethical for a school to not provide the help needed for a pupil who may be sat on a WL for a long time.

Lastly - I've worked in CAMHS for a long time. This is the worst I've ever seen it. It is soul destroying everyday to speak to parents desperate to help their child but the situation being that there is a limited amount we can do.

This must be devastating when you can see your child suffering.

Can you save whatever you can towards a private assessment? Anything is better than nothing, it seems that even if you did get accepted for an NHS assessment it could be years away. If you can only save a little and it will take years that's better than nothing and in the mean time you might be able to access the NHS referral if you keep pressing (I don't know how it works tho).

If the school are behind you it's worth asking what would actually change if she had a diagnosis- is there extra support they would offer her that they won't now (not can't, won't....) I was governor of a school recently where their approach was to offer what they could based on presentation whether there was a diagnosis or not.

but She doesn’t if school are not seeing anything abnormal because the signs need to be present in at least 2 settings. ADHD particularly needs to be seen at school. Has the GP done blood tests and examination to make sure there’s nothing physical going on. ND is not the only possible explanation.

BungleandGeorge

But schools can be biased and lazy as regards well behaved girls not falling behind academically or being disruptive.

We were just brushed off for the above reasons and now have a very unwell girl with NHS diagnosis for Dyspraxia, Autism, ADHD and BPD. Our dd also has a disgnosis for Anorexia and self harms ( often seriously with ODs)which absolutely was caused by her lack of diagnosis and struggles to cope earlier on.

My husband found letters of frustration we write to the crappy negligent senco she had in primary school.

We know this can be common and it isn’t good enough.

she'd never miss school or have a meltdown at school because she's high functioning abd incredibly intelligent.

OP this statement- there are plenty of children who are very intelligent and have significant problems with attending school and have meltdowns at school. I know it’s difficult as we all want gold standard for our children but they should be prioritised if they have clear signs of ND and it’s effecting their life so much? School can put in the same support whether she has a diagnosis or not so ask them to do this. I’d work on rest at home as no child is able to function well if they’re tired. And start putting away a small amount each month for a private assessment if things get no better.

OP said school were supportive
yes some schools don’t have capacity to investigate everyone and sometimes they miss things. They should be able to support all children whether ND or not, and only the most affected need additional resource in the shape of an EHCP. Unfortunately because they’re not parents feel the need to pre-empt problems at school but there just isn’t the capacity for everyone to receive top tier intervention

Why should she? Girls present differently to boys. Why do girls have to wait until crisis and hope parents can pay for private?

We were told by our NHS psych doing our DD’s assessments thst masking amongst girls is common, damaging and how DD’s non diagnosis earlier lead to her subsequent struggles.

''Potentially we could soon reach a situation whereby over 50% of the population are diagnosed with a neurodivergence. At which point, one could argue that statistically, it’s those who are NOT diagnosed who become the neurodivergent population."

This.

So many people do indeed fall into the 'ND' bracket nowadays.

Who is 'Normal'...and what IS 'Normal'?

Those who sail through life confident , happy and stable are rare beings, and very lucky.

So only the most disruptive and stereotypical get the support and diagnosis? It’s well known in all services that ND presents differently to girls and ignoring this whilst prioritising one cohort above another is not ok.