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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Masking is still a problem. If school cared they'd put into place helpful support without a diagnosis!

I agree completely. I have an adult autistic/ADHD son, who was diagnosed at 5. He has needed and continues to need so much support and adaptions made, as do his group of friends. They can't live a 'normal' life or earn a decent wage to support themselves. They rely on the kindness of the community and volunteers to be able to socialise with each other and get out into the world.

On the other hand, I have friends and acquaintances, who are aged 40+ self diagnosing themselves with ASD/ADHD and seeking referrals. These are people who have managed to function in the world, get married, have children and gain careers. There is nothing about them, that suggests that they need more help than anybody else. Now when I'm trying to get services/adaptions made for my son, I have to say "He's autistic/ADHD, he went to special school, he has a learning disability" because simply saying he's autistic doesn't mean as much now, when Bob the banker says he's autistic too. My son, for all his needs doesnt want to be called disabled. We spent years teaching him to embrace being called autistic and he understood that saying this would help people to understand his needs more.

I don't know what the answer is, I get that people are trying to understand themselves better, but I'm concerned for my son and his community going forward. In an ideal, well funded world, everyone would have their needs met. But we aren't living in that world, so it worries me that already stretched resources are buckling under the pressure, because of Tiktok videos convincing everyone that they have ASD/ADHD.

Be aware people stating categorically what the OP 'must' do might be setting up unnecessary conflict. I don't know about Scotland but in England, the referral pathways are different in every LA. In my area referrals from GPs for ADHD are not accepted, it HAS to come from school, shouting at your GP and telling them what they have to do won't make any difference to the referral pathway and any referral they do will be rejected. Equally referring to general paediatrics will be rejected as it is a different department to community paediatrics which does ASD assessment up to 9 after which it is CAMHS. And Comm paeds can't refer to CAMHS either.. yes it's utterly ridiculous.

It’s so difficult. My son has ADHD, and cannot mask or manage himself - he has difficulties everywhere he goes and is only marginally at school and the limited time he spends there also causes meltdowns at home. If there are limited resources, I would argue for him to be prioritised over someone who is more able to manage school for example, because his education now is being affected, and there are future risks associated with suspension and expulsion. But that’s because there is only so much support to go round, and rightly or wrongly, people who are better able to function day to day are lower priority. It’s not fair on anyone.

Lougle
Absolutely. Nobody listened to us in primary because dd caused no trouble. She now has an EHCP and a string of diagnosis .She has spent most of the past few years in and out of hospital costing the state a huge amount of money. If could have been avoided and her life not put at risk.

Whyohwhywyoming

My dd needed her diagnosis just as much as your son. We’re talking about her losing her life, not just getting an education.

I agree too. Ds has been diagnosed with ADHD and ASD but is able to cope at mainstream school. I would agree that he shouldn't be prioritised over someone like your ds because he needs some help, but can cope (normally).
It's not saying that ds doesn't have extra needs, but he doesn't have urgent needs to be able to cope for the majority of the time.

When school assessed and decided he could work with a laptop, I insisted we bought him one, because schools have a limited budget, and I said if the school got one, when we could get one ourselves, then that was almost certainly someone else with SEN going without what they needed, and possibly unable to pay for it themselves.

Fionaville
And my 2 x diagnosis at 50 ard just as valid thanks. I may have a degree and children but ND has wrecked my life. My diagnosis were both fast tracked by the NHS and quite rightly so.

I haven't read all comments so sorry if some things I say may be said already

Try right to chose - gp can do referral for assessment via this. You should ask for a copy of referral form

Try applying for DLA with a full breakdown of the issues at home and any statements from school/referral from doctor, statements from anyone else. Don't need a diagnoses for DLA and may mean that if granted you can use the money for a private assessment if you aren't getting somewhere with the gp referral

Speak to school about support without diagnoses for an EHCP or similar if there are any issues there

My daughter is the same but much younger. Very intelligent. No academic issues in pre school. Emotional regulation is the difficulty for her. Her health visitor referred her the first time and NHS refused it because she didn't have any academic/developmental issues however nursery didn't do a proper report as they didn't know what to do (!). A year and a bit on and she has been referred again by a different health visitor who came to see her at home and agreed. I wrote a very detailed 8 page report/document of all of the things she struggles with and why, with subheadings denoting the different areas together with family links. I think it was a combination of that and that it was the second time that meant this time the NHS have accepted the referral and we are now just waiting for an appointment.

OP if you think you and your husband may be neurodiverse try and get assessed exercising your right to choose which should speed it up for you. My husband and I were both diagnosed with ADHD after about an 8 month wait. I am now waiting for my ASD assessment which I only sought recently. My husband was diagnosed as a child and so was just seeking assessment to see if he still meets the criteria which he does and he is now on medication which really helps. With me, its because I suspected myself but only bothered seeking further assessment because though yes I struggle and could do with knowing, really I wanted confirmation so that it might help people take me seriously about my daughter. The family link is very strong as we now have a number of adults and children in the family confirmed and the adults are all professionals so I feel more confident in saying please don't overlook her because she is bright because we are all bright and achieved but her mental health could be shot if she isnt supported properly. It isnt just about academics.

Oh chill your boots, I’m not diagnosing her. But she’s being kept from the professionals who might. To keep your gastric analogy up, not all lower abdominal pain and vomiting is appendicitis, but people still get it checked out in case. My daughter is autistic with dyspraxia and ADHD and when we lived in the U.K. the gatekeeping was intense. We were firmly kept away from any consultant who might be embarrassed into diagnosing anything which might have led to the expense of local authority support. Our county is notorious for it. It’s part of the reason we stay in mainland Europe

This thread just reinforces everything I already thought about the system. DD 5 is autistic (diagnosed privately through a charity). To be honest even with the diagnosis the school have been completely useless because any problems DD has they say are down to DD not getting in on time (she’s been school refusing & it was taking hours to coax her in). She gradually became more & more stressed & it was just a nightmare trying to get her in to school. Since the school weren’t doing anything to properly address her needs we just told them we weren’t going to force her in anymore. Thank goodness too as we realised soon after she stopped attending that she was in burn out. She definitely won’t go back to that school & we’re awaiting an EHCP but I suspect she’ll need an EOTAS. But the school only sprung in to action when she stopped attending the school despite us expressing concerns since reception.

Yes people go to the GP with lower abdominal pain and IF the GP thinks it’s likely you have appendicitis you then go to hospital because that particular reason for abdominal pain has specific symptoms. My son is also autistic I’m not sure what bearing that has on the discussion? Consultants are rarely “embarrassed into diagnosing” lifelong neurological conditions in the UK. LA support is based on need not diagnosis primarily because diagnosis doesn’t really indicate what support is needed.

Just to counter that, on the face of it it sounds like I'd probably fall off your radar as I had a job and a son. But the reality is more complex.

I struggled to find and hold down a job. When I did get one, a friend basically got me the job. I was in my late twenties I went part time cos I was struggling. I then had a massive breakdown and was very nearly sectioned. I wasn't because I had support at home. I quit the job and tried to get another. A really good recruiter picked me up and got me a job. I didn't last twelve months. I then had DS and haven't managed to go back to work. I should have got a 2:1 at least. Lecturer said it. I didn't. I had numerous issues at uni.

But he's the thing. In terms of my family history no one is diagnosed. But there's my grandfather who gave up work in his late 40s to become a stay at home dad. He became reclusive. It transpired he kept lists of every single thing he bought from the 1970s until he died in 2017. When I say everything, I mean everything and the price it cost. When he died my Dad found the folders and was gobsmacked. He knew his dad was bad (refused to see anyone for years) but not that bad.

Then there's my dad's brother. Still lives with mum (dad's step mum). She's in her 80s. He can't look after himself. He can't dress and shave himself. He will partly do so then forget. Has to be reminded. Refuses outside help. So does his mum. She's in poor health. Dad has no idea what to do.

Then there's my brother. Trans. Need I go further on the know massive correlation between trans and autism? He dropped out of a degree cos he couldn't cope.

DS is doing ok. He's like me in some respects but also like his Dad. His dad got into huge amounts of trouble as a kid but school didn't do anything as they were desperate for his marks and he could ace exams. His school reports read like he did no work at all and this frustrated the teachers because they knew he could. DSs report last year could have been DHs. DH almost certainly has ADHD but has a massively spiky profile. Diagnosed as dyslexic age 18. Behavioural issues (started fires). DS didn't sleep through the night until he turned nine. He was waking two or three times. He's clearly bright but isn't doing tests /work.

Nearly didn't get a referral because in technical terms he's hitting his targets so isn't below expectations. He scrapped at expected level for English (his spelling is truly exceptional though which makes no sense at all) Thing is he clearly should be exceeding expectations but isn't. So it depends on his teacher - he's had a couple who are happy to just let him coast rather be arsed. So he's not meeting his potential. He's currently been moved to a table by himself because he struggles with concerntration but is currently managing to do work. He does strange fizzing and popping in classes.

But chances are he's not going to meet criteria for diagnosis purely because of targets. It really doesn't mean he's not going to have a whole pile of issues. The family history is definitely there but we can't actually prove shit cos no diagnosis.

I don't know when things will next go through. But I suspect we will be an easy refusal. Only for us to have zillions of issues throughout high school. And have to try and navigate everything all over again because 'above average' is taken as 'able to cope'. And it's harder if you have really good support because you don't get picked up as 'in crisis'. Instead family members end up becoming to all intents carers and you totally slip through the net.

It's total bollocks.

DH struggled all through school and in his working life too. At almost 50 he has been referred on to get help that he needs. Has to be formally assessed but provisionally psychology said it's a mix of dyspraxia and or autism. We are also hoping this diagnosis with DH will help get help for the youngest two DC in the family. In the meantime, have applied for SCDP for the youngest who has the most meltdowns. No idea how long the wait is.

Oh and apparently adults cannot be assessed for dyspraxia on the NHS as it is only ever routinely done for children, it would have to be done privately via the NHS or through DH's employer.

@Lougle your dd2 sounds a lot like my ds2. I found that especially since secondary school ds gets help briefly if he has a meltdown in class or a mental health crisis but after a little while with no major issues he will be back to being ignored. It doesn't help that he can't engage in anything school try to put in place for him.

sometimes I wonder if there should be a comprehensive well known list of different types and levels of ASD/ND. It really doesn 't help when people try to diagnose themselves or others because then we end up playing special needs top trumps with people insisting that their child has "complex needs". My in-laws tell everyone that my 9 year old has classic autism when he hasn't, he's high functioning but he also has pica. They have very recently admitted that my 17 year old might be autistic (he was diagnosed aged 9 by the way). And of course my 12 year old is just being assessed "for the money" and so that we don't have to queue at theme parks! I think the only way to stop self diagnosing is to assess everyone in a timely manner but I can't see that happening. The problem with ND conditions is that there is a massive spectrum and there are non verbal incontinent children with severe learning disability being diagnosed with the same condition as my 17 year old who is mostly fine as long as he can stay permanently attached to his guitar or piano and that nothing in his life changes, so basically he isn't really fine but mostly people don't notice his problems. Then there are loads of other autistic people who are completely different again.

Many of us on this thread with our DC would be classed as JAMs. Just About Managing.

Not getting why the range matters. You don’t get support unless you need it and it is individualised. I just have access to an NHS autism support group, adhd medication monitoring and I’m waiting for adhd therapy. My dd doest’t attend the group as not relevant to her but she has a highly specialised more intensive team across services, EHCP, supported living etc supporting her. Those non verbal and in nappies would need different specialised services again. All are needed but very different .

Do you remember the saying every child matters .

it is never mentioned now .

The child who is creating havoc in the classroom gets the attention and funding , the child who masks at school but meltdown at home still matters .

The child who is overstimulated at school but holds it together till they explode at home needs to matter.

my D’s has been under Camhs since year 4 now in college , he has had to work a lot harder than others to manage .

I found Op as the demands in school got higher . His difficulties increased.I think it became more noticeable in other settings

Your diagnosis may he valid but the fact that you have been able to go to university and have children demonstrates that you are clearly not as disabled as a child who is non verbal, in nappies and will never be able to live independently.

It is valid. But your achievements show that you are able to function in the world in a way that my adult DS and others like him could never hope to. When I say "My son won't cope waiting for 2 hours in this hospital waiting room, because he is autistic" It doesn't mean that he will be uncomfortable or even distressed inwardly. It means the due to the sensory overload amongst other factors, he will have a major meltdown that involves screaming, shouting and crying loadly...as an adult. That's just one example, but you get my drift. So saying "He's autistic" would at one time have been enough to gain understanding from strangers, means less now. People 40+ reflecting on their lives and on how they've always felt different, then seeking a label, doesn't help anybody.

We were in same situation.

We paid privately. But 2 years on nothing has changed. Still haven't got an EHCP or any school support because he's educationally doing fine, despite serious mental health and anxiety issues around attending school.

Your diagnosis may he valid but the fact that you have been able to go to university and have children demonstrates that you are clearly not as disabled

Every time I think these threads can’t get any worse they usually do. I have some choice words for you but it’ll probably get me banned so I shall disagree with you politely.

"Every child matters ".
@Starlightstarbright2
Do they fuck.