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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oakleaffy
No they don’t it’s only 15%

DD3 is now out of school. She has limped along since the summer, trying to 'perfect her smile so teachers will be nice', trying to make sure she's perfect in every way. Now she has completely crumbled and it's unlikely she'll be able to stay in mainstream school. If she'd had the help when she was just a little bit broken, the situation might have been able to be rescued.

If you do decide to save/ borrow to go private make sure the diagnosis is done through correct process / guidelines, as pp said.

When dd was referred back to nhs her private clinic letters and diagnostic method were closely scrutinised to ensure NICE was adhered to.

If diagnosed ADHD and you decide to go down medication route you will have to pay for the medication plus a follow up consultation every month until desired treatment dose is reached.

I think that a lot of people with autism as adults have to take antidepressants to cope with life. My son does have ADHD as well, and some OCD. He takes antidepressants, a generic type of Ritalin, and antipsychotics just to cope with life. I myself am on the spectrum and have been waiting to be assessed. I only realised I had it after the end of my last relationship. I was a school refuser years ago but in those days if you refused to go to school they just issued a care order. Over the last few years I have looked back and all of my romantic relationships were obsessions rather than love, which is why they failed. I couldn’t sustain the obsession. These days I have obsessions with other things, such as planes, crochet, ships, the list goes on but apart from crochet none of them last for much longer than a year or two. At the same time I have almost completely stopped being interested in a relationship. I have crippling social anxiety and struggle to cope with adult things and take antidepressants. But realising I have a degree of autism has made me accept the way I am, because I used to be so hard on myself.

Support in school or by other professionals in no way depends on diagnosis. There is no additional help provided just because there is a diagnosis.
a large minority of the population is probably ND, it covers a wide range of conditions and resulting problems. If it’s causing a problem with functioning then the individual needs support, the diagnostic categories were based on males so not necessarily so relevant to females anyway. ADHD meds are useful for some but many are based on amphetamines so not exactly innocuous.

Sorry for the delay, I had to collect her from a sleepover and she's been absolutely manic all morning and is now in a Minecraft trance.

I haven't read all the replies, still catching up and will read through them when I can.

Just to answer a few questions and clear some things up...

We are in Scotland. The process so far is that I called the school to arrange a meeting, the assistant head set up a meeting and asked me to write down everything I could think of about DDs behaviour, habits, likes, dislikes, meltdowns, anxieties, etc in order to pai t a picture of homeDD as opposed to schoolDD. I did so and went to the meeting and when finished she said she thought ASD and ADHD and she'd make the referral straight away. I then received a letter with a questionnaire which I completed and returned. However the questionnaire just wanted straight forward answers and DD is complex so it was difficult to answer, plus there was lots of questions about her behaviour at school, which of course I answered truthfully because she's not disruptive, she can sit still, she does engage, but it's all because she's masking! As soon as she is in the car on the way home from school, she starts spiralling.
As a result of those answers, the letter I received saying there is not enough evidence to go froward to the next stage of the process because she's fine at school.

Do it looks like we definitely have some options, thank you so much for all your helpful suggestions. And just your kind words and support.

To answer another couple of points, I don't want a lable for her, I want support in place before she goes to high school. She is a lot like me in that I was a perfect primary school pupil, I had a difficult home life, my parents were not particularly nice to me ans I always felt like I wasn't really liked and a difficult child, I guess I acted a lot like my DD at home. High school was too much, I was in all the top sets and loved learning, but struggled to study at home, struggled with focus and time keeping in my exams and didn't do as well as I hoped. I also developed and eating disorder, started self harming, and started doing some pretty dangerous things like jumping into a rover I knew to have bad currents, having unprotected sex, experimenting with drugs and alcohol, etc. I wasn't a bad child, but I hated myself, I was on antidepressants by 15, I completed school and applied and wa accepted to university, but I was crumbling and at 18, my parents kicked me out. Obviously I would never treat my DD the way I was treated and I will support her in a way I was never supported, but my biggest worry is that she slips through the cracks and there is no support for her other than her father and I.

Again, I am still reading through all the replies, but it looks like the next steps are to speak to the school about a referral to the Educational Psychologist, and also get a GP appointment for a Paediatrician referral. And above all, educate myself more. It's just a mine field but I will set some time aside to do all the research I need to do in order to help and support her as best I can.

OP you sound so much like my dd and me.Hats off to you pushing for this. I wish I’d kicked up more of a fuss earlier. I did try but got fed up with being made to feel like “that” parent. I now too have an NHS diagnosis for both. It’s so galling to know I was right all along.Do let services know about your ED and childhood if you get to disgnosis. They were very interested in some of our shared experiences. EDs can be common with ND. It might be something to keep a low level eye on.

Enquire has lots of helpful information about the Scottish system and they have an advice line.

Sorry didn't realise you're in Scotland. In that case ignore my comments about Right to Choose (which is England only).

Good luck OP. I have a similar background to you. I'm fairly forthright with my opinions, but I feel very strongly that neurodiversity in itself is not a 'disorder' but a difference. Many of the difficulties are due to engagement with the neurotypical world and the refusal to accommodate our way of thinking - we come up such a degree of inflexibility that we have to mould ourselves into a foreign way of being - ironic really. But we make so many accommodations, it's little wonder it makes us ill. One day history will judge our 'civilisation' very harshly. My daughter and I now have many neurodiverse friends - our world is so much better for those connections.

Go back to GP. Ask Gp to write again to camhs asking for assesment. Email camhs yourself. Phone camhs aswell. These 3 combined can make a difference.

I found ds1's asd diagnosis very helpful. Like the time when he was 9 and swallowed a £2 coin. Dr asked him why he had done it and he wouldn't answer and looked guilty as he often does when asked questions that he doesn't know the answer to. Drs were just about to do a safeguarding referral when I pointed out that as he has autism he sometimes does things that make sense to him but not other people. The drs suddenly understood the situation. I also had problems with ds2 when the dwp took away his disability living allowance. We went to tribunal and I said about ds2 and his autism traits but they said with no diagnosis it didn't count. 5 years later he is still in the middle of a 2 year wait to be assessed.

It varies between areas but where we live there is some post diagnosis support but only for children under the age of 13. Also it took 6 years from me raising concerns to diagnosis and then there was a 3 year wait before we were contacted by the post diagnosis support people. We now have to wait 2 more months for the first appointment. By then most children will be too old anyway.

DLA is based on needs, not diagnosis. If the FTT required a diagnosis, they erred.

hi Op my autistic daughter stays at home wednesdays and it has had a huge impact - she is much better able now to cope with school.IF school won't support the diagnostic process just take matters into your own hands.

btw given how many years the wait is - could you save for a private diagnosis? It's about £2,000

This is such a bonkers statement that I'm struggling to find words to describe it. You clearly have zero understanding of the issues in question and insufficient experience with ND ADHD people if you came up spouting this nonsense.

It's the same line of argument as saying the UK is on its knees because of boats coming to Dover, you sound like a Daily Mail reader.

On what basis? Other parents of autistic children have affirmed their child also requires recovery time from meltdowns. Meltdowns that are hours long every day are not something to ignore and pretend everything is ok because she is forcing herself into a school every day.

Potentially we could soon reach a situation whereby over 50% of the population are diagnosed with a neurodivergence.

That seems a bit alarmist. The best estimate is 1 in 7 have some type of neurodivergence or 14%. ADHD and ASD are smaller % within that 14%.

The reason I advised recovery from meltdowns is because it avoids the child getting to the point of burnout, which can make them suicidal. It is not playing the system to give a parent advice that can enable them to avoid the horrific fear and stress you went through with your child but rather get the care they need before they are actively suicidal. In any event, an actively suicidal child like yours was would still be prioritised over a child with poor attendance that is necessary to keep them from becoming suicidal. I hope your child is doing better that must have been horribly distressing for you.

Even if camhs think that the score on the dimensions survey wasn't indicative of ND they still need to follow up on the behaviour being exhibited with meltdowns and burnout.

Private diagnosis might be useful BUT diagnosis is NOT a solution. She needs to have support for the parts of life and strategies to manage, those DONt automatically follow diagnosis anyway (as everyone with autism is different). Push on CAMHs for what she CAN access such as talking therapies and various stress management groups?

School system won't see it as theor problem unless she is a problem at school. Your seeing the issues at home so you need to go down GP/nhs route - though you may be waiting 2 to 3 years for a referral as waiting lists are that long

(And yes, children struggling with meltdowns and being overwhelmed by their emotions often get to meet with camhs after a suicide attempt)

The UK is moving to not diagnosing children with ASD and some trusts have already started this process. There will be an expectation that schools will make reasonable adjustments based on need without a diagnosis but autism specialists are not being consulted and have concerns about this and the impact on young people when they turn 18 as employers, colleges, universities require a diagnosis to implement reasonable adjustments.

OP in the nicest possible way a child who is not struggling at school is not going to be high priority for a paediatrician or an educational psychologist assessment. People will advise you to do all sorts but the most important thing is to support at home and at school. What have you put in place? How much sleep is she getting? What have school done? Have they modified demands on homework etc. it’s only after those things have failed that they will look to support further because there is finite resource. Our school has 2 Ed psych consults a year. Some have none as there are very few Ed psych working for councils. There’s a lot you can do. You’re comparing her to you but it sounds like your parents were really unsupportive

I'll edit your post for you:

"OP in the nicest possible way a child who is not struggling at displaying behaviours that cause school trouble is not going to be high priority for a paediatrician or an educational psychologist assessment."

My DD2 was that child. Right up until year 10. Then she fell apart. Big time. She went from full time, to missing some lessons, to part time, to me being told not to try to bring her to school because it was too distressing for her. To being completely out of school. To being given an EHCP and moved to an expensive independent specialist school and moved back a year, to being out of that school again, to being given an EOTAS package.

It is so short sighted to say that children are 'not struggling in school' when they are actually just trying their hardest to contain themselves in school.

As someone who was diagnosed privately at 35 and whose daughter has just been turned down for an assessment (Manchester Social Communication Pathway) I needed this. Thank you.

The system is bloody broken