Husband doesn’t want to tell teacher we will seek ASD assessment

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So we have a parent teacher evening on Tuesday and husband doesn’t want to tell DD’s teacher that we will be seeking for a private assessment for DD as haven’t been referred on the NHS.

i said we would be needing their help with this as they would speak to them when doing an assessment and since she is doing well at school they may need more time to observe her to see if they can for example see she’s masking. If it comes out of the blue to them they’ll just be like no she’s fine

he thinks when we are getting closer to getting the assessment done we will speak to them- he doesn’t want to ‘spread rumours’ that DD is autistic when he doesn’t believe she is, and it would make them think she is without a diagnosis

i think that’s what the parents evening is for/ to discuss stuff like this. I also think the teachers are well trained in this regard, and have a good understanding of what autism is. I told husband he needs to do the same course I did about understanding autism so he would understand it better and see how DD could have this. She will not change with a diagnosis, she will be the same amazing her, but the struggles are already there and she really needs help. Having a diagnosis would help her so much. He is really stubborn and doesn’t know enough about autism.

what do you think? Should I tell her teacher? How to convince husband about this. He says he will only research it if DD is diagnosed

Thank you so much for all this. There’s so much useful information there I need to make notes of.

should I ask about the EHCP after the assessment has been done or before it?

@WindowsSmindows absolutely, categorically incorrect. The "opinion" of a parent is irrelevant. Information will be collated and two or more specialist clinicians from several sources, including direct assessment of the child, and they will work to evaluate that information and formulate the best understanding of the child's presentation.

Please don't talk about things you don't know about, it's really unhelpful.

If you think DD needs an EHCNA you don’t need to wait for a diagnosis. Support is based on needs, not diagnosis. Have a look at IPSEA and SOSSEN.

School do need to know so they can support your child. This isn't something embarrassing or shameful it's a condition that may require adjustments to your dd school experience. School staff will not discuss your dd with other parents or children. The senco is the best place to start. Btw adhd is usually 7. There's not really an age for asd. My ds was 2 when he started pathway and 3 when diagnosed. If there is any support identified by school - social group, 1:1, salt etc that support can start before diagnosis. School can put your child on a support plan if required.

So much misinformation around ASD and diagnosis! One parent thinking a child has or does not have ASD has is not going to decide if the child gets a diagnosis or not. Every teacher in the school thinking a child doesn't have it is not going to prevent a child getting a diagnosis - teachers are definitely not highly trained in ASD, they may have been on a day course and the SENCO may have done a bit more but they will not be highly trained. I know many who have said 'they're juts naughty' or just not spotted the signs.

DS was diagnosed in 45 minutes by an NHS ASD specialist, his dad had no idea if he had ASD or not, and the teachers filled out a glowing report saying he was the perfect student with no issues with friends. From the things the assessor asked him I could see that he was ticking a lot of boxes (very literal, doing things in exactly the way he would at home rather than being imaginative etc)

Teachers should not be saying things like ASD is not diagnosed before 7 because dr's don't like to label children. This is so blatantly wrong in so many ways. Firstly many children are diagnosed before 7. Secondly it suggests that being 'labeled' as having ASD is some sort of negative, awful thing (what a terrible thing for a teacher to imply!). Thirdly ASD is NOT a label. Naughty is a label ASD is a diagnosis. There is just no comparison. The teacher may be getting mixed up with ADHD diagnosis which just shows how 'non expert' most teachers are. It does not sound to me like dd ticks boxes for ADHD as her concentration sounds far too good.

Are you just going down the private route? Personally I'd see your GP too to start the NHS process alongside. Having the private diagnosis should help you get a NHS diagnosis. DS had someone come in from SEND to observe him at school and the lady had so much experience she was brilliant. Not that his primary school did a single thing she recommended and I had to push like crazy just to get him sat right at the front of the class (can't filter distractions so misses a lot of information) as that's where they liked to sit the 'naughty' kids, well behaved and clever ds they liked to to stick right at the back.

I wouldn't expect too much help though, when ds was diagnosed with ASD and dyspraxia we got a reading list and the option to go on a course that had a 9 month waiting list - but at least we know what's what now and have been able to read up.

Does your daughter need more help than school could be expected to provide? That's what an EHCP is for. I know for sure despite the things he struggles with DS definitely wouldn't qualify, school are perfectly able to support him, they just need to bother to put the things that help him in place! Also schools are normally fairly good at noticing kids that need speech and language therapy - so if they haven't and you haven't noticed any issues then i doubt she'd qualify. We weren't offered any OT help either despite ds being dyspraxic so unless she has quite major issues again I wouldn't hold your breath - we never asked though so perhaps it would have been different if we had. Sorry to not be more positive!

Despite all the negative ds got mostly 9's in his GCSE's when he had a great head of year who got him sat at the front of all his GCSE classes (on my request) - it only took 3 years.

It is possible to get an EHCP when the school could do more, but won’t.

OT and SALT can also be part of an EHCP so even when a child doesn’t meet the threshold for NHS OT and SALT, or where ICBs don’t fund sensory OT, they can still receive the therapies.

I don’t think there is anything the school could do more, I think they have already been great at supporting her. They have placed her at the front to encourage her to speak and they’ve put her in a special group in the afternoon to increase her confidence.

Where DD struggles most is managing her emotions. She gets so sad (meltdowns) about everyday simple things (especially routine change, sensory), and is self harming. My friend suggested to me saying that I understand you, it is really really annoying when this happens… but… for example I understand you really really want chocolate, but mummy doesn’t want you to eat too much chocolate because it will hurt your stomach. I think this, me trying to understand her more has definitely helped from having the situation escalate to the point she’s saying she wants to kill herself. We were trying to leave through the door a few days ago and I had given her a few different sweaters and jackets and she was starting a meltdown because she had a long sleeve dress underneath and the sleeve was getting a little folder which was driving her had. I did manage to calm the situation by saying oh I completely understand how you feel, that is so annoying when that happens, but you need to wear something on top because it’s cold outside and the sweater you want right now is in the wash. So yes where she needs help is managing her emotions.

I am glad you are getting an assessment and your DH is on board.

FWIW i have a nearly 13 year old who was diagnosed at the age of about 4. The school recommended the assessment and I was distraught. DH was in complete denial. So you are starting off in a better place than we did!

The diagnosis has only been beneficial. It has meant we could start to research ASD and then adapt what we learned to DS. Emotional self regulation has been a challenge but we are getting there. The school were thankfully totally on board and have been really good. He has extra time for exams etc. It has meant that we can explain some issues when he has had to have medical treatment and we have been able to access the Special Dentist as he has sensory issues around his teeth. That in itself has been a game changer.

There is always more the school could do, even if that is referring on for outside help or applying for additional support if internal support isn’t enough.

Are the school providing emotional literacy support, sensory breaks, a time out card, prior warning of changes, allowing noise cancelling headphones/ear defenders? Are they allowing DD to arrive/leave via a quieter entrance 5/10 mins early or late? Do they have a member of staff who delivers any counselling sessions, drawing and talking or Lego therapy type interventions? How is DD coping at break/lunch?

The sweater example may not necessary be about emotions, but about sensory differences. It may well have been far more than annoying for DD. At the extreme it could have been very painful.

The special care community dentists DSs are under are brilliant. Patient, non judgemental and much more willing to make adjustments. But it shouldn’t be limited to those with a diagnosis.

YY to what @Thatsnotmycar says about sensory issues around clothes. This has been a very major challenge for us. Thankfully DS can handle his school trousers but little else but we basically encase him in super soft long johns year round as he struggles with textures. It is all a learning process- learning potential triggers.

I agree with you about the Special Dentists also @Thatsnotmycar . They have been incredible. DS' previous dentist even knowing he had autism was quite aggressive when DS struggled to have his teeth looked at and touched. It was a true blessing to be able to transfer (although it took nearly a year for that to happen from referral!). Ours are definitely by diagnosis and GP referral only. I hope that is not the same everywhere as I know many people would benefit from that.

Your area really shouldn’t be rationing care by diagnosis. If the people you know who would benefit from special care dentistry feel able to challenge it they can as it shouldn’t be happening. They are disabled and have the same needs regardless of whether they have a diagnosis or not.

Wait until Tues to see if the teacher replies (it's half term now). Ask for a meeting with the senco and discuss everything you've mentioned on here. Their support will be key - if they're good it'll make all the difference to your DD in school. Even if your DD is managing OK on the surface they can make her school day easier. They may have wellbeing breaks, play therapy etc which may make her home life easier with less meltdown at the end of the day

thank you for all those ideas what the school can do to make the days better for DD, I think some of those would be very helpful.

Yes I still haven’t received a response from her teacher. The doctor said it should only be a week until we hear back from the doctor doctor doing the assessment for booking an appointment so I thought I will follow up at that point to see if she’s received the email.

I did mention in the email I would like to speak with the SENCO, but I wasn’t sure they would allow me to have an appointment with her without a diagnosis. Last year the teacher told me there was a lot of people waiting due to Covid.

The school must make their best endeavours to meet DD’s SEN with or without a diagnosis. Don’t be fobbed off about speaking to the SENCO.

You can ask for an assessment before diagnosis.
The EHCNA should take 20 weeks start to finish ( statutory guidelines) however sadly it often ends up taking longer so get the ball rolling.
A diagnosis can be helpful but it's not essential, we started the process before any diagnosis. However we did get private assessments along the way ( due to nhs waiting list) and they were helpful as they specified the support needed.