Will ASD referral go anywhere if DD is well behaved?

[GagMeWithASpoon]

I have always suspected DD might have ASD for various reasons, but I have always managed her needs well enough that it wasn’t really a “thing”. She managed quite well in primary too , and the few times she didn’t, they didn’t want to hear as she was beautifully behaving and doing well academically.

Since starting secondary though, things have become a lot trickier. Socially and academically. Last year, year 8, she completely crashed in many ways and needed A LOT of my input. From help to regulate and sensory inputs, to social aspects and how to navigate them, to melting down over homework because none of it made sense or revision was too overwhelming. She also brought up autism herself and the possibility of her having it.

I’ve started talks with the school and pastoral care are listening, supportive and acknowledge there might be something there.

I have the forms and doing the parent part and sent the school one in.

The issue is , she’s beautifully behaved and quiet. To the point some teachers didn’t even knew her name last year. She hates fuss or any kind of attention, so even if overwhelmed at school , she’ll suck it up, hide to cry, or dig her nails into her palms to stop herself for crying or she’ll draw on herself as a distraction etc. She’s “fine”. She hates asking for help in any form or talking to the adults. Very few adults know her and the ones that do , know the “well behaved, quiet , polite” girl. She performs pretty well, but again that’s because I do a lot of prep and give her a lot of support with it. They’ll be the ones filling these forms in and I suspect most of it will be no issues.

There’s a lot more I could write, but I’d be here all night.

I’d just like to know , considering the situation at school , what are the odds of her referral actually going forward and her being accepted for an assessment?

Being excessively shy, quiet and polite is not normal teenager behaviour, though. I'd recommend you go through your GP and via the NHS funded Right to Choose pathway with an independent provider. You don't need school involvement at this stage. Prior to the assessment the school will be sent a questionnaire, but even if the school contributes little the clinicians will be spending quite some time with your daughter and listening to your experience, so will be making up their own picture.

I have been to the GP and I got given two forms to fill , one for parents one for school. No mention of right to choose , and I’m already stressing over what to do with them , because GP just said “I’ll leave some forms with you at reception, when done send to CAHMS”. Send where? How ? What address. Nevermind that the form says to email to GP (it’s a paper form printed from an online format and the boxes are too bloody small to fit everything in) , a friend said that the school will send them off . So I have a billion questions just over that.

My GP is not…. great. I wonder if I should ask for another appointment, this one face to face, as the first one was over the phone.

Are you in England? The easiest way I found for my son (while my daughter has been on NHS waiting list for now almost 6 years) was to Google Right to Choose providers and look at their website for waiting times and process of referral. Many providers (e.g. Clinical Partners, 360 ADHD) had a questionnaire on their website. If the answers indicated ADHD or ASD, you were asked to forward it to your GP and for the GP to directly refer you, just on the basis of that questionnaire. It's pretty straight forward.

I didn't see my GP, just emailed him the questionnaire and asked for referral. I found that they don't want to be involved, so it's best to make it as easy for them as possible.

Someone can be well behaved and have autism. That isn’t a barrier to being diagnosed.

I do know that , but reading through the process , these questionnaires are for triage purposes and they can be rejected. Considering the massive waiting lists (even for this initial stage) , how many kids are struggling a lot more than DD , I was just worrying that she’ll be rejected at this first stage.

1. The referral will be reviewed by medical staff, to determine what type of assessment should be scheduled for your child or young person.
2. You and the professional who submitted your form will be told if your referral to the service is declined. If your child or young person is accepted, they may be invited for an initial assessment once they reach the top of the waiting list. You may receive requests for updated information 2 to 6 months before an appointment is scheduled to ensure we have the most current and relevant details.

Unless I’m reading it wrong?

I’d be happy to go private, but no idea how to go about that either (I’m finding all of this very overwhelming) and the welfare officer at school told me to go to the GP.

If I’m fucking up happy to be told so , especially if offered some guidance.

Yes I am. I’ll try that approach as well, I’m blindly navigating this , so just doing what I’m told, and then stressing out when things don’t make sense and worrying over stuff. I know it’ll be a long process , so probably best to pace myself. I just don’t want to mess this up.

Referrals can be rejected, but that decision won’t be solely because a child is well behaved.

Very polite well behaved young people can absolutely end up with EHCPs, diagnosis and even special school.

Getting there can be a challenge. We started out with school saying they couldn't refer and we should go via GP, and GP saying they don't and we had to go via school! Do your own research on the current diagnostic pathways in your local area. Even GPs don't always know the most up to date info and things can change as LAs subcontract out diagnosis to private suppliers. No one will probably offer you right to choose,but you can do your own research and ask for it.

Diagnosis and getting help in school are not as connected as you might think. Schools are meant to give support based on need not diagnosis, and even an EHCP does not require a diagnosis (though it is often helpful as part of evidence). I would kick off the assessment request with GP, and/or look into private options, then go back to SENCo and say she has been referred for assessment, now let's talk about getting her needs met in school. They should not gatekeep based on diagnosis or lack therefore, but there are a lot of children who need help, so it's a question of convincing the SENCo of the ways in which her needs are not being met, and the areas in which she needs more help. Without an EHCP it can be productive to think of some suggestions which are fairly easy for school to implement - bring them solutions rather than big, amorphous problems to solve IYSWIM. You are more expert - and they are less expert - about your child than you think.

My child is 9, very well behaved and was referred in year 1 through school for an NHS assessment. We've just had the first appointment recently (start of year 4) and I think we may get a diagnosis soon.

So in answer to your question, yes but it takes time.

Thank you all for sharing your experiences, offering advice and reassurance.I’m reading it all, taking it all in and coming up with a plan B.

DS was assessed and deemed to meet the criteria for a diagnosis of Autism and ADHD a couple of years ago in year 9. At the time I didn’t think he would be referred never mind end up with a diagnosis as he is really not a difficult teen and we have no problems at home or in school. Never have done. I told the assessor this at the interview and she said that many parents say the same thing; parents love their kids and adapt to cope and manage what seems normal behaviour. Often, as is the case with us, neurodivergence is so normal in a family that no one in that close nit environment sees it as a struggle. They just get on with it. DS is lucky in that he is G&T and in a school for gifted kids. His SENCO estimates that over 50% of the children in the school have some SEN needs. So, again, from my POV he was doing just fine.
I heard so many stories about how hard it was to be referred for assessment, I really didn’t think that he would be.

The referral questionnaires were an eye opener for me and reading his teachers comments about his social struggles and stimming behaviour really made me realise that the assessment was necessary. It was not even a little bit difficult to be referred and the wait on the NHS was 20 months. I chose not to use right to choose as I didn’t see an urgency to our situation.

2 years on and not a lot has changed, he has some special provisions in school for his occasional overwhelming need to move and stimming that would get a neurotypical child into trouble. He qualifies for some provisions in exams (a private room) so far he has chosen not to take that option.

DS's school ticked all the highest (most able/best behaved/gets on fine with everyone) boxes on his assessment. His behaviour had never been an issue at school. He was always sat right at the back as he was no trouble.

This made no difference to his assessment, I wrote a lot about his issues with transitions, sensory issues, explaining jokes etc etc and the paediatrician did an ADOS style test where his black and white thinking was very clear, he was well behaved there but anxious.

This was 10 years ago though and they have made it harder to get an assessment now I think, DS was diagnosed with Asperger's syndrome which has also been scrapped.

Just do your best OP and be honest, that's all you can do really.

DD was diagnosed with no issues, and she has an ehcp, and hasn't been in trouble at school once (I think the only behaviour point she had was a late due to a delayed bus). In her case she's quite obviously autistic and was younger but I don't remember behaviour being a huge part, or any, of any of those processes (in so much as they might ask about transitions but the emphasis is not on whether it's 'bad' behaviour).

As a cautionary note though- as other pps have mentioned, once you get a diagnosis the autism gods don't offer you anything (apart from a leaflet). School should be making those reasonable adjustments without a diagnosis and there will be loads that doesn't need an Ehcp either, especially if her academics are good- most children on the SEN register will not have an EHCP. So I'd get all that moving in a collaborative way with the school and not wait for a diagnosis.

I had a meeting with the SENCO where I highlighted all the difficulties that DS was having at school that they weren’t aware of. E.g. he wasn’t able to go in the dining hall because of the noise and smells.
He was also very well behaved and never in trouble, the word you want to put on your form is ‘hypercompliant’, and explain that her good behaviour is due to anxiety.

As previous posters said, a diagnosis has no direct impact on school SEND provision, but unfortunately imo, even a lot of SEND provision in school does not always make school life easy or even bearable for everyone, as there are structural, systemic and physical issues that make it difficult for SEND pupils that often can't be changed. I would start by looking at what your daughter needs and is good at, and also asking your daughter what she thinks would make a positive difference, and trusting that you both are the experts, as you know your daughter best. You then need to advocate for that to happen in school, as collaboratively, polite and kind but persistent as possible, and hopefully it makes a difference. But if the school environment itself is the issue (too many people, school uniform, smells, germs, toilets, changing clothes, noises, lights, inability to eat or drink even in what they call the 'quiet room', 'quiet room actually being a very loud room', intimidating behaviour system, threat of detentions, exams, just too many hours, too few hours left to self-regulate by spending time on special interests etc), you could consider alternatives. There are a lot of alternatives to 'normal' school and some of it depends where you live. You can apply for an EHCP with named EOTAS provision, but it's a long battle and often unfortunately there needs to be 'evidence' that education in school is not appropriate, so often it feels as if the rails must have come off clearly and for the school to feel the pain. Ideally though you want to intervene early enough to avoid any school absence or even burnout/trauma. I think the most damaging thing for many children is to be home with EBSA without a proper education/timetable/purpose while they wait for an EHCP/LA to put something into place/SS placement. It's so hard to catch up/get back into a different routine after months/sometimes years of limbo so that many struggle to cope with something they would have experienced as a relief/motivation/fun if it happened straight away the moment they started struggling in school. But there are also options for children without EHCPs. Several FE Colleges e.g. offer part time schedules for GCSEs for home educated children aged 14 -16 - a halfway house that could reduce overwhelm by reducing the timetable to essentials, like English, maths and science (or functional maths and English), reducing workload on parents and allowing time to pursue something she is genuinely interested in (special interests are always great for neurodivergent children) in her spare time. FE colleges also are on the whole less prison/school like - no uniform, more freedoms to move around and come and go, usually students are more treated like and behave more like adults etc. Expressively, part time courses at FE colleges for 14 year olds are only for EHE without EHCPs (at least in our county). There is also online schooling and while that might be difficult if she needs a lot of imput, it might work surprisingly well with a reduced timetable and more overall time/energy to expand on each subject. Or an online course/text book course with weekly tutors in the main subjects. Maybe even your current school agrees to a reduced timetable with shorter attendance. We EHE with the help of online lessons, which is often not recommend as you let the LA off the hook to provide an education for your dc, but I think it gives us a great deal of freedom to find what really works best for our children without having to justify absences etc. We also don't need to wait for reviews to change things if they don't work, and there is no record that closes doors for our children if they suddenly 'snap out of it' (they can surprise you, and a EHCP can mean that some schools will refuse acceptance by arguing they can't meet needs). It gives them time to focus on their special interests, which help them to self-regulate and also get them out of their comfort zone to learn stuff they need to live independently one day (e.g. one of my children is into music and volunteers weekly in local primary schools as a classroom helper for instrumental classes. It means they are absent from online school for two full afternoons a week, and as they are EHE that's not an issue. They are free to catch up on the weekend. My other child is into backpacking. Wouldn't go out of the house at home due to ASD linked anxiety and mobility issues but somehow blossoms when abroad travelling (I guess it's a dopamine hit for their ADHD, quite similar to me when I was their age). We couldn't afford travelling in the school holidays, and it would be too crowded for their ASD, but out of season we have learned so much about geography, foreign cultures and languages without missing any education, and mostly learned a lot of life skills and confidence). I know many families whose home ed children spend a lot of time with animals or on sports. You can also choose GCSEs or any qualifications that actually interest them but are not available in school. My child is e.g. hyperfixated on animals and does certificates in dog training and animal behaviour as part of their timetable and considers this as a future job. We also started some GCSEs early, so that school is more interesting and relevant and at the same time not so overwhelming as exams are spaced out a bit. With home ed, you can take them when you want. I know of quite a few families who take 1 to 3 GCSEs every 1 to 2 years from 13 to 17. With home ed, you can also choose the examination board for each GCSE, and there are surprisingly stark differences between the boards so that some content and assessment styles suit some children much better than others and make the difference between passing well and failing.

You can apply for an EHCP with named EOTAS provision, but it's a long battle and often unfortunately there needs to be 'evidence' that education in school is not appropriate, so often it feels as if the rails must have come off clearly and for the school to feel the pain.

To get an EOTAS/EOTIS package via an EHCP, there always needs to evidence that it is inappropriate for provision to be made in a school. It isn’t just often needed. It is the legal threshold as per section 61 of the Children and Families Act 2014. Although that evidence doesn’t mean there has to be any or multiple school placement breakdowns or that a child has to remain in an inappropriate setting to gather evidence. Some secure EOTAS/EOTIS without their child stepping foot in a school (or even a nursery or childcare setting).

a EHCP can mean that some schools will refuse acceptance by arguing they can't meet needs

This is only possible with wholly independent schools, and then a refusal to offer a place is just as likely without an EHCP because schools make their decisions based on the child and their needs, which still exist even without an EHCP. Schools who are not wholly independent can, and must if they are parental preference unless the high bar for one of the lawful exceptions, be named even if they object.

I’m in a similar position OP with our DS and just wanted to give a hand hold and to say you’re not alone. We’re waiting for an ASD assessment and supporting our dd the best we can. Like yours, she’s well behaved at school but does have focus and confidence issues. We’re trying out a private tutor one hour a week right now just to try and boost her confidence and reinforce what she’s learning in school. Sounds like you’re doing all you can, well done. I’d keep on at the school though with the SENCO to ensure her needs are being met whilst you’re waiting for the ASD assessment. Good luck, we’ve got this x

Thank you . Just got the forms back from school (quite impressed with how quickly they had them done). Surprisingly, the person filling it in has noticed some issues. Bless her little cotton socks, she’s not masking as well as she /I thought she was. This means she’s struggling even more than I thought. Or that this year’s staff actually “see” her.

I’ll scan the forms at work on monday and then ring the GP and figure out exactly what I’m supposed to do with them next.

Once again thank you to everyone for sharing your experience and advice.

As an update, we just got the letter today that she has been accepted for a referral, so I guess I was worrying about nothing.

Let a very long journey begin.