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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OP, am also in Scotland, and we had issues for exactly the same reason as my daughter Masked in Primary school. We went to our MSP and she was really helpful.
Got re- referred back to CAMHS and yes, my daughter has ASD. She is an adult now, and her Psychiatrist thinks she may have ADHD too ( both my husband and I are diagnosed with ADHD).

Have you requested an EHCNA yourself? You can request an EHCNA yourself. On their website, IPSEA has a model letter you can use. You may have to appeal, but it is possible to get an EHCP when DC are academically meeting or exceeding AREs. EHCPs are about far more than academic ability.

Lots of autistic girls fawn rather than display freezer flight or flight. This and masking makes it seems like a child is not struggling, but they are and the consecutive be devastating.

The quote didn’t work, but this was in response to @PeskyPotato.

My son is 15, the system has let him down. He's not so bad he can't function "normally" at school, he's great at masking and by the evening having massive meltdowns. School are happy for him to coast (the same school system that failed to recognise he was blind till the age of 10, luckily a clinical fix, but not without future repercussions, and still some difficulties, so forgive me if I have little faith in the system). He's in the bottom set for most subjects.

He's had counsellers, pyscologists, family therapists, you name it, mainly the blame indirectly fell on me. I see flashes of brilliance in him. He has sensory issues galore, severe mood swings, is impulsive, physically very boisterous, (he used to hit/kick me, thankfully now if he does injure me, it's because he's not aware of his own strength and he is remorseful) he stims, occasional ticks, a crazy long term memory, but rubbish short term. Is only interested at school if the subject or the teacher engages him, but isnt so badly behaved as to be disruptive at school. I have not one shred of doubt he has adhd. Other cousins of his have various ASD diagnoses, from both sides of his family, others aren't diagnosed, but have ND traits and quirks.

A diagnosis is unlikely to help him educationally now, I couldn't even get an EHCP in place for him when he couldn't see, I spent too much time having to fight that battle it's probably too late for the adhd battle.

I'm having him assessed privately though, as I want to know, I want to know there was a reason parenting this gorgeous quirky crazy boy has been so challenging. I want to know so he can find ways to cope when life gets difficult, so he doesnt think he should be fixed, but he should find ways of working with his strengths and finding something that's right for him and know its OK not to conform.

There is a huge spectrum I get that, but just as our NHS system is broken, so is the school system. There has to be a way to help those neurodiverse kids learn more effectively. My son's SENCO scoffed when I tried to explain if my son could smell unpleasant food wafting from the canteen you'd have lost his attention for that entire lesson.

I don't know yet the results of his adhd assessment, I'm not even hopeful he'll get diagnosed, the school reports probably weren't conclusive enough. I doubt any parent would go to the trouble to get their child diagnosed just to label them, there's no doubt he's neurodiverse, I just hope if he does have struggles in a world that's designed for neurotypicals that there's a place he feels safe to express himself without being misjudged.

At the moment he has a good solid friendship group, but I worry his impulsiveness could pull him in the wrong direction, it scares the life out of me, there are just too many temptations for kids to indulge in and no matter how much they know something is wrong, the chances of an adhd child giving in to temptation is just too high.

He has a loving supportive home, but it can be chaotic and stressful for us all.

I don't know what the answer is, but after another crazy evening of meltdowns, I just needed to vent!

My son broke his arm years ago, very mildly, was fine in a few weeks.
Someone I know broke their arm, needed pins and plates, much longer recovery.
Roald Dahl's Dad broke his arm, had to have it amputated.

All 3 has the same diagnosis, a broken arm. Three very different situations. Was my son's broken arm as bad as an amputation? No. Did I tell him to stop making a fuss because he didn't need pins or his arm amputated? No.

Autism with learning disabilities is harder than high functioning autism, which is harder than autism traits, which is harder than "self diagnosed but probably wouldn't qualify for assessment" autism . We all know that. But that doesn't mean that the person who has one of the last two types isn't struggling.

I can't remember who it was who was saying that soon neurotypical people will be in the minority. I agree that the people who sail through life with minimal problems are very lucky. But just because your life isn't perfect doesn't mean you are ND. Most people struggle with some things, that's normal. Being ND enough for an official diagnosis is so much more than that. It's not being able to talk on the phone, it's about crying when you're 17 and your mum made lasagne but you always have cottage pie on tuesdays. It's about eating the plaster on your bedroom wall when you're 9. It's about not being able to go to scouts unless your mum stays with you. It's not being able to leave your teenagers home alone for half an hour. That's high functioning. Then there is still in nappies as an adult, not being able to communicate, not being able to have a hair cut, constant supervision, using toddler reins when they are 10, never being able to read or write. That's the more severe end of the spectrum.

It doesn't help that celebrities and magazines are encouraging people to think that if they are not perfect they must have a disability. Celebrities describe the normal hormonal crash when your milk comes in as a "battle with postnatal depression" and having a cyst checked out as their " journey with cancer"

Fionaville

It’s not about reflecting on lives, it’s about having lives wrecked and made hugely challenging hence it being thought I should be diagnosed.My life has been hugely impacted in every way hence the diagnosis.

Oh and re handling hospitals of which my daughter with GCSE’s has been in and out of on repeat the last few years. She smiles sweetly in waiting rooms and with all staff then self harms in private to get over the trauma. She is on a cocktail
of medication and has a serious eating disorder to cope with life. She has made several attempts on her life.She is currently being assessed for supportive living and has enhanced PIP.

Your son’s difficulties do not trump my daughter’s because they are more visible. I have empathy for you however I will not sit and let you and others like you belittle my daughter’s diagnosis or other other girls like her left to struggle into crisis because their autism presents differently.

100% agreed, I am surprised that poster didn't understand OP's daughter likely needs recovery time to avoid burnout and then spiralling, having gone what she says she went through. It's rather obvious and empathy goes a long way. It's not a race to the bottom, oh, look me and my child/adult relative have it worse in life than you so you lot should just crack on.

Clearly people who are suspected ND are entitled to access help before they completely break down but the services are understaffed and poorly managed. This doesn't mean they are there only for the most severe cases, what a ridiculous attitude.
It's like saying people with Stage 1 cancer shouldn't go to cancer services at all before they are really bad to free up spaces for stages 3 and 4. Functioning and highly functioning (but what does this mean, really, is different to everyone and still very difficult) ND people will progress to declining MH, eating disorders, sleep disorders and other physical comorbidities in time unless they access help beforehand. The cost of managing and curing those vs prevention is incomparable. The NHS is years behind in ND and MH services and this in many cases causes other health issues. To pretend it's not the case is disingenuous.

Yes thank you. We've got the EP in today in fact doing a needs assessment, but school still doing nothing to support us and don't see what all the fuss is about while he's been in a&e at the age of 10 for three suicide attempts due to school anxiety.

@oakleaffy
'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."

You are displaying your complete lack of knowledge on the subject.
You need to educate yourself.

@50apd15h my dd sounds very much like yours. Missed a year of school due to being a mental health inpatient at 14-15. Did her GCSE’s in one year and came out with seven 9 and one 8. Significant self harmer. Dh and currently taking shifts overnight watching her as she is refusing to sleep. Recovering anorexic.

People only see the 9s. The fact she is in school. We have been so very let down and I am so exhausted by all of this. We feel very let down by CAMHS, their support came far too late.

in my job (which I am probably going to have to leave … again), I see many girls (and some boys), like my D. What would help? Schools just understanding. Not throwing detentions at girls who are too scared to move in school, make them speak out in class. So many small things that cost nothing.

I am hopeful that the Oliver Mcagowan mandatory training is adapted for schools. This change is attitude costs nothing.

@imip I’m at the very start of this with Dd12. She’s high performing academically, is struggling with transitions and organisation then being threatened with referrals which lead to her falling apart at home. Yet I’m being told she doesn’t need support even the most basic reasonable adjustments aren’t being met consistently. First term in and I’m just exhausted by it all.

My initial comment was literally about people in their 40s watching tiktok videos and self diagnosing themselves with ADHD/ASD. I know people like this. Those who feel a bit 'socially awkward' and prompted by these videos and posts, are reflecting back and looking at situations in their lives, that to them, justify saying they are probably autistic/ADHD.
I understand more than most, that these diagnosis display differently in people. I haven't belittled your daughters diagnosis. She clearly has struggles which are harmful and debilitating in ways. Your daughter isn't in the group I'm talking about.
I'm talking about the people who's lives for 40+ years have run pretty smoothly, they have been able to function well enough. But because they are always running late, losing their keys and feel a bit socially awkward sometimes, they have convinced themselves they need a diagnosis! And that in itself is harmful to people who do actually need more support and understanding. I don't know why that would offend you, if your daughter has such difficulties?

Fionaville

“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.”

You were referring to me and indicting that unless people react like your son in a hospital waiting room they don’t deserve their diagnosis.

@Fionaville If you think that people really are referred for ADHD assessment purely based on some simple issues which could well be part of their personality or a result of a busy life, you are very much mistaken. I suggest reading less rags poisoning minds with false information that everyone is now diagnosed because of TikTok.

It is not a bad thing that awareness of ND has increased and it is a good thing for the vast majority of people who struggled throughout their lives and often masked that they can now understand the reasons why. So for shallow judgement people like you, quote, they were coping with life ok, but in reality it only looked like they were coping whereas they have always felt like inadequate misfits and had to mask and work extra hard pretending they were coping.

Stop backpedalling, you clearly are one of those on this thread who think this is the race to the bottom and you definitely have it worse than others so others don't deserve support because their invisible struggles are made up TikTok fad. You should be ashamed.

@itsallshite 👏👏👏👏👏 thank you for this!

A race to the bottom? As I said in a previous comment, in a perfect world everybody would be catered for, but we aren't in that world. We've got a tory government who don't care. Where people with needs aren't getting any support and where children are waiting years to be diagnosed and are left to struggle in school. So I'm sorry, but these adults who call say things like 'neuro spicy' and are functioning well, shouldn't be negatively effecting people with high needs.
I'm not getting any information from 'the rags' I know enough people like this is in life. I know lots of people with varying needs and I know how stretched services are. So yes, when yet another well functioning adult, who've I've known for years and I know well, tells me that they think they are "probably Autistic or have ADHD" I will continue to inwardly groan.

No I wasn't suggesting that at all!
What I'm saying is that people who have lived their entire lives without struggling significantly, then seeking diagnosis for ADHD/ASD, because of watching these videos etc, aren't helping people with high needs.
People like that do exist, I know them and because I know so many young people with high needs, who aren't getting their needs met, it bothers me.

You are clueless @Fionaville, and you're digging a hole even deeper.

It's "affecting", not "effecting" as a side note.

I am sorry to hear that @SpaceRaiders .

For me, realising that my second daughter was probably autistic around 11 years ago, began a chain of events (as many here have probably experienced) of realising that many family members are autistic - my DB has just been diagnosed at 50. It has explained so much in our lives. DB is taking it very hard as he is wondering how much better/different his life would have been had he known when he was a child. I reminded him that without support you would probably still be in the same place. My dd failure to get support couldn’t stop all the difficulties she has and is encountering.

OP- if I was in your situation I would (I) keep a diary, (ii) have school keep a diary, (iii) contact a local autism support service and ask if they would be able to go to your DD school and explain masking and how it impacts the person, (vi) ask school to do some interventions (local autism support service should be able to help but things like check in's, movement breaks, allowed to do activity that helps with regulation ect - these will need to be tailored to your daughter - there are lots the school can do that doesn't cost anything and isn't a massive burden on the school which can help - sometimes you need the horse to water though - noting that there is a possibility that your DD doesn't have autism but these techniques can help NT/ND children), (v) get re-referred with more 'evidence', (vi) invest in some regulating tools - adhd swings if you have the space/make a calming space that's just for DD, books on special interests - think you said your DD likes maths puzzles so a book of maths puzzles for example, (vii) when your daughter needs a melt - give her space to do this and be there for when she is regulated enough to share/engage (viii) operate a low demand environment at home.

I understand and agree there should be more help available but honestly the local services can be so helpful. Having been through 6- sessions with a CHAMs psychologist - my experience is they work with the parents for you to implement the support at home. I also suggest you reach out a a support group for parents of ND girls - great place to pick up tips and more ideas which may work.

For the posters who are saying things like 'soon we will have 50% ND population' - well maybe that may be true but perhaps it is the time for schools to implement a more ND friendly way of teaching...a lot of the methods are so beneficial to all kids I.e having timetables to take anxiety out of what's happening, giving kids movement breaks to get energy out and help them reset, help with interpreting social situations/how conversations work ect.

For the posters that are blaming the new 'ND trend' for the waitlists and saying that they negatively affect their children's struggles - we all walk in different shoes, yes some people still manage to 'succeed' (uni/kids ect) but you or I have no idea of the internal struggles and the effect that has had on them, nor the daily struggles they have behind closed doors - yes outwardly they are 'coping' but just like everyone else they have a right to access support that they feel they need - the NHS is for everyone. We all want our kids to achieve their full potential and have a solid core - that is what parents/people are fighting for I think.

I am coming from a place of having a ND son that was diagnosed at 4 (after 2 year waiting list)...we fought to get support in place for school - his trajectory has completely changed as a result of that plus a lot of intervention at home. For the future, we hope he will now be able to lead an independent life and be a contributor to the economy. We were lucky - I had access to some exceptional support which allowed me the knowledge to fight plus I had the time (I didn't go back to work while my DS was young as he wouldn't cope in childcare for more than 2 hours - 3 x week until he was 4 and he even then very slow building up) - we were very fortunate to be able to do this. On a personal level this has come at great cost but that is a different thread.

I now lead inclusion and diversity in my team at work - the world is changing, slowly shame is being 'detached' from being ND, workplaces are making adjustments in order to allow their employees to be their best - it's good for the employee and good for the bottom line of the company. However, for the to happen - people need to identify that they need the help/adjustments.

I do often wonder why there is such an increase in identification of ND conditions and this is my 2 pence:

• we live in a much higher demand environment- tech/screens/texts/more lights/work life balance depleted/constantly contactable/huge expectations due to more information about others
• more parents working - longer days for kids so less 'down' time (no judgement I also work now)
• less (community) support to stay at home parents
• better understanding of conditions
• more expectations on kids in school
• no change in teaching adaptions - the model of sit and do your work still exists (noting in offices now many use standing desks)

Did you know that ADHD was first identified when kids were expected to sit and learn for 6 hours a day - this didn't mean it wasn't there, it's just the environment didn't make it prominent.

Good luck to anyone who's ND or supporting ND - we should all try to be kind to each other - the world is hard enough.

I've been through the same thoughts with my own diagnosis. Remind your DB that a diagnosis when he was a child would've been in the 70s and 80s...back then, there was a lot of stigma around autism, and it would most probably have been a one-way ticket to "special school" and no chance of a fulfilling life; it's very tempting for those of us who've been diagnosed very late to put on the rose-tinted glasses and imagine that life would've been so much better "if", but the reality would likely have been far, far worse.

Just look at all the people who've been institutionalised for years (decades!) despite having relatively low support needs, where they were shoved into facilities and environments that seem purpose-designed to accentuate their difficulties and then medicate them away, out of view of society.

We just have to take comfort from the fact that our children are growing up in a world that's moved on a long way from that.

But given the expense or the amount of time and the stress of having to go through all that... I remain unconvinced that even this argument holds up tbh.

If that was the case - that they weren't struggling significantly - then they would never be diagnosed with either condition, because "causes significant difficulties" is a mandatory requirement for a positive diagnosis.

@RedToothBrush @ntmdino I personally know 3 people who fall into this category, who have either been diagnosed or are on the waiting list to be diagnosed. Two of them I've been good friends with since primary school, I've been on holidays with them and I know how well they've been able to live their lives. Nothing about them has ever suggested they are on the spectrum, they've never had mental illness nor have they ever needed any significant support. Then plenty more people who are now casually saying "I've got OCD" or "I've got ADHD" or "I'm definitely on the autism spectrum"

If someone has significant difficulties related to their diagnosis and they haven't just been influenced by the latest trend, I really don't see how they could take offence to these remarks.