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
...

Agree. My DD was told 3 year wait to see CAMHS. Poor staff are so under resourced it's a massive scandal. We paid £1k for private consultant then more for meds and the difference was huge. Bottom sets to top.

@ntmdino dh and I are very similar to you and yours. He has autism and I have dyspraxia so we often joke that between us we are a whole person too. Dh does the driving as I can't do that and I do the long term memory stuff including remembering people's names.

I don't think the quotes of mine you quoted are quite the smoking gun you think they are. I never said 'Everyone who seeks a late diagnosis only does so because of watching tiktok'
I've said time and time again, that it is happening. And it shouldn't. If people haven't spent a lifetime struggling (however that struggle looks) and are being influenced by social media, just to 'understand themselves' more, with the pressure the system is under at the moment, it shouldn't be happening. Not when we have children and adults, who are genuinely struggling left on waiting lists for years.

The only people I'm offending are people who fit the Tiktok category. The people who have lived a relatively happy, independent life. The people who are able to live successfully without needing greater understanding or support. But are just now, after seeing the endless videos and posts, thinking "That could be me! I don't like talking on the phone, I'm often late and I lose my keys all the time" Then they end up down the rabbit hole and reflect on their lives, making themselves fall into the category. Then seek a diagnosis.

If the people reading this fall into that category, then fine, be offended. I'm offended by them. For anybody else who have genuine struggles themselves or their loved ones do, I hope that they can get through the system quickly and get the support they need.

No, you just refuse to understand Fiona, I give up on talking to a brick wall.

Trust me- 50 year olds aren’t on TikTok.

I lived with zero understanding or support my entire life because there was none. Define successfully.

And you can’t make yourself fall into that category or cause issues to waiting lists unnecessarily.The queations to get through screening alone to get through to AdHd diagnosis are waaaaay more than losing keys which you minimise. Out of 20 questions there is a question re often misplacing things at home, work and elsewhere.

And yes it is like talking to a brick wall.

DD is in a similar position in that both we and school can see she's masking but obviously CAMHS won't help unless there's trouble at school. The head has just found out that the local health authority have come up with a new pathway for girls in this position that they're trialing. She's managed to get a place on the training and will then use it to do assessment observations on DD in the classroom. We have fingers crossed this will lead to the assessment she needs.

But tbf, in the example I gave the OP was doing very well at work and 'had never experienced any anxiety or depression' in her life. So things were good at both work and home by her own admission. This to me doesn't indicate the 'significant difficulty in at least two areas of life' which like it or not is supposed to be the NHS benchmark for a diagnosis.

In many areas of the NHS treatment seems to be allocated via need, so somebody with a slightly dodgy but generally functional knee wouldn't be priority for a knee replacement over somebody that was on crutches. That doesn't seem to be the case here, possibly because of the difficulty/resources required in accurately assessing need, so you have high functioning middle aged people doing ok in life being put ahead of kids that are at serious risk of falling through the cracks and never coming close to the level of attainment of the aforementioned adults.

Whatever you say the fact is that a diagnosis is supposed to require significant difficulty in at least two areas of life and I'm just not seeing that with a lot of the people posting about it. 'Significant difficulty' isn't putting off the housework on the weekend after doing a demanding job and rushing around the kids all week. And besides, the meds don't generally help a lot with procrastination anyway, so a lot of people have false expectations. Many of these people have seemingly already made the adaptations required to function which in most cases is the recommended solution for the procrastination element.

And I've not been 'on and off' medication. I came off just over a decade ago in my late teens and never went back on.

I know diagnostic criteria.

You're not a psychiatrist to be assessing how much others struggle because this isn't always a visible scenario and it is often masked by support from others which varies. A person who believes they meet the criteria or at least some has the right to be assessed and this has nothing to do with you.

ND's existence and severity needs a professional psychiatric assessment, not somebody from MN yapping that 'X doesn't really struggle so they shouldn't be hogging the queue'. This is fundamentally wrong and this is the line of your and Fiona's arguments all along.

SharSharBinks

”so you have high functioning middle aged people doing ok in life being put ahead of kids that are at serious risk of falling through the cracks and never coming close to the level of attainment of the aforementioned adults.”

Where on earth are you getting the evidence for that? I have 2 kids falling through the cracks who were fast tracked for their diagnosis through adult services. Most children will be picked up now and diagnosed through school or CAHMS before they get to adult because knowledge is better.

If you’re doing ok in life you’re not even going to get through being referred from the GP. And the screening questions alone indicate huge difficulties ,let alone the diagnosis process. And “ doing ok”’is hugely relative and not always indicative from appearances anyway.

Also, the meds definitely can help with procrastination, I see it every day in my own home. What you're saying clearly points out you weren't on the right medication for you and should've had gone back for a review a lot sooner if you stopped when you did instead of self-medication which is not a great idea.

You're not a psychiatrist to be assessing how much others struggle because this isn't always a visible scenario and it is often masked by support from others which varies.

Well, if somebody is doing very well at work and happy in their home life, where is the 'significant difficulty in two areas of life'?

I didn't say the meds didn't work either. I said I didn't like the eightfold increase in the likelihood of parkinsons and other basal ganglia afflictions.

What I’m interested in is the verification of the answers because people will see their issues subjectively. For example, I probably lose my keys once every couple of weeks. One person may see that as a lot and say ‘Yes I lose things all the time’. Another may not see once every couple of weeks as a lot and say ‘now and then, but not often’. So person 1 would tick that box and person 2 wouldn’t despite having the same level of issue. So can I ask how is that squared for diagnostic purposes? I haven’t been assessed so just curious how it works.

so you have high functioning middle aged people doing ok in life being put ahead of kids that are at serious risk of falling through the cracks

You are so completely misinformed, it’s laughable!

That's something that drives me nuts with the online questionnaires, and even the real diagnostic ones - the lack of specificity. They're full of "sometimes", "often", "some", "many" etc without any definition of those terms.

Maybe the reason for this "big increase" is the fact that not only were autism and ADHD underdiagnosed in boys but they were virtually undiagnosed in girls thanks to a belief that they were only issues that boys faced.

I would most likely have been diagnosed with both before starting school if I had been a child in the last 10 years or so. But because I'm over 50 I was never even assessed. Because I'm female, female generally present differently to males BTW, able to mask for a short period of time, am verbal and have a high IQ. As it is I didn't get my ASD diagnosis until I was 45 (and I was in the room less than 5minutes before the assessor could see the traits, they had to remove the ticking clock because I started to focus on it). Pretty sure I'm also ADHD, but tbh found the autism assessment so mentally draining that I don't think I can go through another.

To the op
Definitely give your child a day off every now and again to recover from both the masking and the meltdowns. Masking is mentally exhausting, I didn't realise how exhausting until after I made a conscious effort to stop the masking.
As for a meltdown, it's again exhausting, both during and after. All I want to do the next day is sleep and stay away from the world at large.

I’m surprised by that. Self reporting is tricky anyway but I would’ve thought they would’ve made the bar clearer than that. So in theory 2 people with the same level of difficulty could end up with different outcomes? One with a diagnosis and one without?

No, not really - the diagnostic screening questionnaires would come up with different results, but they're generally only used to provide context for the structure of the interview in the assessment process. They're mainly to help the assessor prepare for the interview and participation tests, which are the actual assessment.

I asked my assessor about it, and she said that if the proper process is being followed, any variation would be identified and accounted for anyway.

Please read with understanding.

You said meds didn't help with procrastination issues. I said they definitely can help with that and maybe yours weren't suitable for that reason.

You're twisting words.

I'm not twisting words, I'm literally stating what I said.

I didn't say the drugs weren't effective for me (else why would I be wanting to restart?). My comment about procrastination was clearly about other people's expectations.

I think you need to read with understanding.

She's about the age where it seems to start to all go a bit tits up for girls in particular - the social demands of school have increased as friendships become harder to navigate and we move on from the "you're my friend because we've got the same shoes" type stuff in infants.

DD2 is similar - we ended up paying to go privately because in school she's a ball of anxiety about doing everything right, following all the rules, being kind and pleasing the teachers... so they saw no problems and didn't see the child clawing her face to ribbons to cope on a sensory basis, or melting down in terror over some perceived infraction of a "rule" that she'd done three weeks before, or sitting in her own excrement because the Covid-rules had said they had to stay in their place and therefore in her mind she couldn't go to the toilet.

We ended up moving school because while our infants was superb, the SENCO at the junior school openly refused to accept our child's diagnoses (done via the NHS for other conditions prior to us going privately for the ASD one) and wrote targets which were basically "I will try to be less dyspraxic". It was fucking shocking and he was backed up by a class teacher and ex-SENCO there who was similarly useless and it took us a long time at a new school to undo the damage that place caused to DD2's self-esteem and willingness to engage in school.

DD1 is on the waiting list for assessment at the moment though and we've been told to expect a good 2+ years wait. At present though she's coping well, school are prepared to support as if she is confirmed autistic (with the fact that DD2 and myself have diagnoses and DH is definitely neurodivergent it's fairly likely) - if she starts struggling, we'll pay and go privately.

As for the "what use is the diagnosis going to be" brigade. If you've got a good school like we now have for DD1 - probably minimal in the short term (which is why we're OK sitting on the waiting list for the moment), but if you've got a school where you need to squeeze every single potential adjustment out of them like getting blood out of a stone - like we had with DD2 and where the child is beginning to struggle - it was worth every penny. It gave us quantifiable information about what she was finding difficult, on the magic "bit of paper from a professional" (and it was accepted no problems - the only comment I had was from the GP of "flipping heck that's a really good thorough report") and it means that at times such as transition to secondary school - DD2 is firmly on the radar of the SENCO and SEN team from the outset. For myself as well, diagnosed at the age of 40 something - it was absolutely life changing in that I understood WHY I struggled with certain things, WHY situations had panned out badly for me and gave me the power to just advocate for myself much more rather than just apologising for my existence. It also gave me the permission to forgive 8/9 year old me, in bother yet again for saying something "wrong" without a clue what I'd done to end up in bother yet again. A manager at the time I was diagnosed commented on the change in me and that it had been the making of me in my professional life as well... I do not regret for a second going for the diagnosis.

I bet half the people you refer to, don't even tiktok because they aren't the tiktok demographic.

But as you were...

Forgot to add that there will be people who downplay theirs and their child's difficulties. Sometimes because they are scared of what will happen if people know how hard they find things. Sometimes because this is their normal and they don't realise that NT people have it easier. Dh is genuinely surprised that ds1 gets PIP (standard rate for both care and mobility) and that ds5 gets high rate care, low rate mobility dla. He will quite cheerfully tell family members that our dc get high levels of dla when there isn't much wrong with them. Which has lead to BIL telling everyone he knows that DN is entitled to DLA for her medical condition (even though he has never even looked at the form) but they don't claim it because they don't need it. BIL looks down on us for claiming dla for the dc because he hasn't tried to claim it for dn. Tbh I think most people who don't live with us think that ds1 (autism) is just a bit quirky, ds2 (autism and suicide attempt) is just a bit shy. They don't see a lot of their problems because mostly we don't talk about them to respect their privacy.

I have just started receiving DLA for my third autistic child. I had been putting it off but really she needs the recognition that goes with it to allow to have a carer support her when she attends etc. I feel quite sad about this, because it feels like the only recognition of the amount of support we give our dc as parents. This is normalised in our house. I am grateful ful for this recognition and of course the financial support as I have often not worked to support our dc.