Is having an autism diagnosis actually helpful?

[AutismPosts]

Please be kind.

We're looking into getting a private autism assessment for our almost 16 year old. It'll destroy our savings but we cant wait for years and I'm not completely convinced we'd get one on the NHS anyway.

We've been having problems for a few years. It seems like normal teenager stuff for the most part (but see below as it isn't all) eg bad attitude, back chat, low level defiance etc. She generally seemed happy enough though until the last few months.

I'm not sure it is autism. I think she is picking up some behaviours from her friends and is emphasing them eg she likes watching the sharks at the local aquarium sometimes and bought some books to learn about them. She has now declared sharks as her "special interest".

But she is getting distraught and we're stuck.

We're also terrified she is developing an ED.

She also said a few days ago after an argument that she self harmed at the end of primary school/beginning of high school but has stopped now. I have no reason to disbelieve her but at the same time we never saw any evidence and she won't give us details (we're not pushing on that point). She bought it up and says she stopped a few years ago. We're keeping an eye on her.

So basically we're willing to do anything.

She refuses counselling. She says she is speaking to someone at school but I dont know... my husband doesnt want to raise our worries with school.

School have not expressed any concerns and they are normally very proactive and on the ball.

We've asked her why she wants an assesment/diagnosis. She says it's so she can step out of class if things get too noisy and "for exams" but won't/can't expand on that. She says she wants a label for how she is feeling.

If she doesnt come back with a diagnosis, what then?

But if she does, what then? She has dyslexia and was delighted when it was diagnosed a few years ago because it explained why she struggled with spelling but now she wishes she hadn't been assessed because people treat her differently when they find out. Won't that be the same if she is diagnosed with autism?

We just want to support her and get her whatever help she needs.

Support in schools and exams access arrangements are based on needs rather than diagnosis.

Having said that, I would pursue an assessment and I think diagnosis, where appropriate, is important. If she is diagnosed, she doesn’t have to tell everyone.

You need school evidence to get any sort of diagnosis. So firstly I suggest asking to speak with the SENCO to see if there are any issues they have noticed in school.

You can also get an idea of who she is speaking to in school and get the issues she has raised eg anxiety, exam access arrangements and self harm etc down on record. But they may not have noticed - often girls mask. The key question is would they support a CAMHS referral for diagnosis? If not, why not? Would they consider helping with the anxiety pathway instead? If they won't it is because there aren't problems in their setting, or that they aren't noticing.

This doesn't mean no diagnosis, but certainly makes it very difficult (we waited 2 years for evidence from school for DD) so I'd make sure to get lots of evidence to support diagnosis from lots of other settings or situations if you are cleaning out your savings for this. And don't start the private process until you have lots of evidence

It sounds like she is struggling and your first port of call is the school - come back when you have some more info - there are lots of different options depending on your situation. good luck

In some cases, it is possible to get a diagnosis without the school’s evidence.

If they won't it is because there aren't problems in their setting, or that they aren't noticing.

Not always. Sadly, sometimes some schools don’t support a referral despite seeing the signs.

I would say there are many benefits from getting a diagnosis. You don’t have to tell anyone if you don’t want to. For us, it helped ds to understand his neurodiversity and for us all to understand where he might struggle and how to support him.

school were much more accommodating once we had a report which set out reasonable adjustments he needed (e.g. he gets extra time for tests) which school hadn’t even mentioned was a possibility and it’s useful for the future e.g. if he goes to college/uni etc.

it also makes it a bit easier for me when I need to ask them for something extra/some flexibility because I can say the report recommended it (and they are more receptive I think)

that being said all reports are not equal and school told us his was one of the best written they’d ever seen. I paid for it and I went with a local recommendation and we travelled to another county for Ds’ appointments altho I did mine by Teams

the time out/take a break and extra time in exams you shouldn’t need a diagnosis for but you would need to talk to the SENCO as they’d need to assess if necessary

Hi @AutismPostshow are you getting on now? As others have said, extra help in exams is available even without a diagnosis. Have you managed to arrange that yet?

And have you applied for an ECHP yet?

She has had her assessments and we're just waiting on the report which we are expecting in the next few weeks.

The problem is that life has kind of fallen apart since this post so I don't know whether she will have presented as her normal self during the assessments iyswim. We couldnt have rearranged without hefty fines so went ahead anyway.

She's struggling with other stuff that's going on so whatever the result is she will find it difficult.

It was funny though because they do a secret school visit to watch the child without them knowing (as you'll know). We didnt know when it was. We wondered how they would observe her secretly. Then one day she came home and told me about a new teacher visiting and how she was selected to tell them about what school was like, her favourite subjects etc and that she saw him having his lunch near them but he left after that. I thought ah-ha!

That would surprise me considering the funding desperately required in schools at the moment, SEND is one way to diagnose.
although many sendcos are part time and still teaching and very very busy - our FT sendco is amazing but works around the clock!

Wow, that’s unusual although I’m in Primary - we do have an ed psych that we hire to come a couple of times a year and she’ll come into class and do a quick observation to see if she can point us in the direction of say ADHD, autism or dyslexia so we can then go down that route, but for diagnosis I have only ever known them to be done in writing and on zoom, even private (most private ones are nhs ones too)

Im obviously a teacher with a little insight, but I’m a parent going through ADHD referral at the moment. I was strongly advised to go through NHS right to Choose because it’s formally recognised and private isn’t - plus if DC needs medicating at some point, we’d have to have done it and paid privately if not done via NHS.

Please please speak to school if you haven’t, all schools should now have access to a Mental Heath Support Team provided by NHS therapists - they can do 1:1, small groups, class stuff. They are quite new and it all seems amazing - designed for mild to moderate need before it escalates to major (I was an active follower of your other posts so I would seek support in your school)

wishing you all the best, I do hope you can find access to some support yourself, please don’t burn out, you seem such a strong and person. But don’t let that be your downfall if you are feeling it all get too much. 🥰

@JoB1kenobi schools don’t get more funding just because a child has a diagnosis (private or NHS. It isn’t lawful for schools to have a blanket policy of refusing to accept independent assessments/diagnoses just because they are independent). Coding a pupil as K doesn’t require a diagnosis either. The legal definition of SEN does not involve having a diagnosis. Support in schools is based on needs, not diagnosis.

I think the argument is that you can say "my child needs x" or you can say "these experts say my child needs x and here is the formal evidence".

That isn’t what pp was saying. They were conflating diagnosis and school funding. Your “"these experts say my child needs x and here is the formal evidence" is exactly the point that support is based on needs, not diagnosis.

Although private, the company carries out NHS assessments too and is a recognised provider. We checked that before paying. 😊 Because of her age and delicate mental health we didnt think we could wait the years an NHS diagnosis would take.

I worked for the NHS a long time ago and did some very high level work with the SALT team. They worked with the autism service and carried out school visits to assess the children who had been referred. If I remember correctly the lack of Speech therapists was causing the long delays with autism assessments. They didnt have enough SALT staff to carry out school assessments. This was a long time ago so I may be misrembering but there were definately school visits somewhere in the autism assessment process.

Our assessment involved

• talking to parents (1.5hr quite intense meeting!),

-reviewing documents such as her dyslexia report, school reports etc,

• gathering information from/meeting with school,
• observing her at school
• a play session with her (or the teenage equivalent).

Once they've collated everything we'll have another meeting (up to 2hrs!) to go over the report, findings and recommendations.

It feels very thorough so hopefully whatever the outcome, the report will be useful.

I'm quite confused though because the "issues" (for want of a better word) have only really manifest over maybe the last 2/3 years. Prior to that, she was absolutely fine. But it has built up over maybe the last 6 months.

She is being very, very particular and inflexible at the moment but that is to do with some other family stuff and I think she's just trying to control what she can.

I do still think some of it (excluding at the moment because nothing is normal right now!) is her acting in a way she thinks autistic people act. For instance she had some tshirts with itchy labels recently so we cut them out (I think everyone has done that at some point autistic or not) but instead of it just being some annoying labels, she says its because of sensory overload due to autism and proceeded to cut all the labels out of all her clothes, even ones she has had for years. Obviously there is nothing wrong with cutting out labels if she wants to but I dont understand how a tshirt she has had for literally years and worn happily suddenly has an awful label? Similarly, now she cant decide to learn about something without declaring it her "special interest".

I have gently suggested this to her in the past (in a non criticism way) and have been trying to apply parenting techniques recommended for autistic children but it's not made much difference.

But anyway, we'll see. Either way, she is still perfectly her and we'll still keep trying to find the best way to support her.

But "the experts" often carry more weight than parents. So from that point of view, a diagnosis does help get the support needed. Maybe it shouldnt but in schools with very little spare cash, it does help to identify "priority students" (said with air quotes!)

You can have evidence, including from professionals, of needs and required SEP without having a diagnosis.

Two people with the same diagnosis can have very different needs and require very different SEP. Hence support being based on needs rather than diagnosis. Otherwise you would have people receiving inappropriate support &/or too little/too much SEP.

Yes, I agree it’s more helpful than having no diagnosis - and the NHS is a pain with the wait. I’m lucky that we’ve got time on our side as my DC is almost 7 so we have a couple of years before formal assessments begin. I feel for us it’s those assessments that will need the extra time or a quieter room.

I hope the results, whatever they are, help you all.

There is funding for anyone with a formal SEND diagnosis and this includes ADHD and autism. Schools fund the first £6k and LA the rest if more support is required.

Now I don’t know the legalities of accepting the legitimacy of private vs NHS assessments, however I was advised (and a quick google search will back up) that not all institutions will accept the diagnosis including GPs and with the acceptance that all post-diagnosis treatment is also self-funded. I never said schools won’t accept it nor have a blanket exemption of private assessments.

I am also aware of pupils on the school
SEND register without a diagnosis also - you can be a fantastic coder and be on the register as it’s a specialist need! It may not come with funding though. I am also aware of pupils with autism that get nothing support wise as they don’t present needs in school but they’re on the register.

I don’t understand how you’ve come to the conclusion that I’m arguing against this.

The notional SEN budget doesn’t work like that. You are confused about that. A school doesn’t get more funding just because a child has received a diagnosis. That is what I was pointing out. It is wrong to say a school gets more funding just because uses a child has a diagnosis.

You have misunderstood the part of my post about coding. I was talking about how pupils are coded. Not a pupil’s ability to code.

You said private isn’t formally recognised. I was pointing out schools can’t have blanket policies for refusing to recognise. The same applies to LAs and NHS. That isn’t the same thing as saying GPs have to agree to shared care - they don’t (GPs don’t actually have to agree to shared care even if it is an NHS diagnosis) and I never said they did.

I just wanted to hop in here, about sensory issues.. all my dc have dyslexia, one also has an autism diagnosis (and I suspect has adhd but has not been assessed), and one is currently on the pathway for autism & adhd assessment. So when I say that I suspect I have undiagnosed autism & adhd traits myself, please humour me!

I have found that - in terms of sensitivity to clothes labels - things can vary massively. If I am highly stressed / tired / overwhelmed, then it might be that I get extremely irritated by a clothing label, even if I have worn that item of clothing many many times before. And I just wanted to add (for people who have never experienced it) - it can actually feel like razor wire against the back of your neck… so I take the clothing off, expecting my neck to be all bloody, from something like a staple or sharp bit of metal embedded in the label, and there will be nothing there, just the softest of silky fabric labels. It is absolutely bizarre - just how sensitive a person with autism can get, to something so innocuous. Sometimes my hair really really irritates me, and I have to tie it all back to I can’t feel any of the loose ends anywhere on my skin…

My own view on autism that it is essentially like having limited bandwidth in your amygdala… (a key part of your brain). so if you are tired, feel unwell, are very anxious about something, have fluctuating hormones, are overwhelmed with deadlines / stress - then your amygdala won’t cope, and it leads to shutdown or meltdown.

For me, label sensitivity in your daughter (and also having dyslexia) does point to autism traits, but also points to the fat that it is probably triggered by increasing stress and anxiety (is this an exam year for her? As school may have been pressurising the students for the whole of year 10 & year 11 - and she may be finding that very difficult to cope with. Anxiety is also very common in autism. Label sensitivity, food sensitivity and lots of other things are also considered common in dyslexia, but I suspect autism is common in dyslexia too.