Is an ASD diagnosis worth it?

[squeakyclean13]

Can you tell me if there are any advantages to getting an ASD diagnosis in primary school? My concern is that the kids will get a label, but no practical support or interventions. I have been told that SEN kids don't need to meet their educational targets and am worried this is what the school will focus on rather than giving additional support to help them meet the level their peers would achieve. I'd be grateful to hear your thoughts on this.

For us is was definitely worth it. My child went from clinging onto the school gates and refusing to go in in year 1, to blossoming, with a few simple things in place. (Now yr 6.) While the actual diagnosis took a while, (ridiculous waiting list etc) , initial paediatrician appointment we were told diagnosis very likely, and in the meantime the school should consider him autistic. He was already on a one plan anyway and with this information they put all sorts of little things in place to help him achieve his full potential.

It should crazy that 'sen kids' would all be lumped under one umbrella and don't need to meet targets? DS is the most academic kid in his year, has been from the start, and school have really helped him keep on track to achieve his full potential. As I sat, little things have made the world of difference to his school experience, and without that diagnosis, he may well have been a very different story.

It's not a label. It's a diagnosis. It won't change who they essentially are.

Whoever told you SEND children don't need to meet targets is talking bollocks.

Teacher here and parent of ASD son. Agree with previous poster that it is rubbish about SEND children meeting targets.

All children have individual targets.

Re the diagnosis, it will protect them. It will enable them to access support. It definitely isn't a label.

That's very encouraging. What sort of practical help have you had? Our only offer of support has been to put the kids into the breakfast club, which has helped a bit - but we have to pay £50 a week to do it

We have no support at all and have been told the low income families take priority

That's reassuring. I don't want the staff to give up on them in favour of the kids they can get to the finish line

You need a meeting with the school SENDCO if you are getting no support and have had that comment made.

Definitely worth it by secondary. Also a teacher here. The students I know, who have chatted about their diagnosis with me (and I realise this is a self selecting group), seem to like the reassurance that they're not going mad. It provides a really important explanation for why they don't see or experience the world in the same way as others. And I think that validation is really nice to have. I know that's not the key part of it, or the goal.....but I think it's what the students I know feel is very very useful.

@squeakyclean13 there have been all kinds of things. Eg things that happen in class like him having his own desk in a certain part if the room where he feels most settled and this doesn't change even if they change the rest of the class around. Teachers have emailed me pictures of the classrooms when they redo them in the holidays so he's not upset by the changes. They understand where there are things he won't cope with and find him alternatives, eg he runs the sound and lighting for the school play rather than acts in it. In his current class he has a 'wobbly' cushion, I think there's a specific name but it's a sensory thing anyway! He goes in his own room for tests. Etc etc. Many little things and it evolves as he grows with regular one plan meetings.

Then senco has also put in some support from speech and language (for social reasons, not speech difficulties as such) over a short period, referrals for things such as OT and play therapy.

I spend so much extra time adapting my classroom and my teaching to support the pupils in my class with varying SENd needs. Plus the extra paperwork involved.

I find it quite offensive that someone would assume we would just give up on any students in our class.

The more I think about it, the more I think that the person who suggested this to you is a knob.

Diagnosis is incredibly important for a child's identity and their own understanding their challenges/needs, as well as everyone around them.

There are many children who go undiagnosed in primary who then completely fall apart when they transition to secondary and some of those children then do not want to engage in the diagnosis process. It takes some time to process new information like this and the earlier you start it the better the outcome in my experience.

A diagnosis may also form part of an EHCP if you apply for one. Again, it is a diagnosis not a label.

DDs diagnosis its worth it's weight in gold, not only did it confirm the autism I was sure she had but her cognitive testing also showed that in most areas she is exceptionally gifted but has an average working memory and processing speed which holds her back.

Her diagnosis means she has had adjustments put in place specifically for her ASD such as toilet passes, quiet place to go at lunch to help avoid noise but also in class more specific help to support her working memory and processing such as a quiet room during testing, any work that is being copied from the board is printed so she can copy from directly in front of her. Without the diagnosis she would have continued to coast as a good student but not meet her potential and would be coming home exhausted and have shut downs from masking all day.

Her teachers work incredibly hard to challenge her whilst supporting her other needs, to suggest children with Send don't have to meet academic markers is just not true.

@Curioushorse yes, DD was bright, quirky and at Primary but coped fine and fell apart when she started High School because it was less structured and noisy. She begged me to help her because she thought she was going mad. Couldn't understand why she could suddenly not deal with things she had in the past and others around her could. Why she was suddenly having panic attacks and felt exhausted pretending to be someone else all the time. Having that validation that she just has autism and her feelings are totally normal have improved her MH and spirit no end.

That person is a parent of a SEND child at the same school, who was describing her experience with her child's teacher. Our school is not a particularly good school

Thank you, that's so helpful x

It’s not a label, it’s a diagnosis. That can’t be said enough.

My childs school were unhelpful to say the least before diagnosis. Now, anything we ask for is accommodated. Mostly just small adjustments. The attitude change from school staff once we had diagnosis was obvious. I’m ultimately glad because things are so much better but it pisses me off that they wouldn’t help much before. Everything says they should, but they didn’t.

I feel for kids and their parents on waiting lists for diagnosis if their school is like ours

If you have the chance of starting the process now, I'd definitely do it. We had been trying for years without success. It's only when the wheels well and truly came off in High School that we got a referral.

You really don't want want DC2 has gone through happening to you DC.

Ours has been similar. DS has motor issues now proven to be caused by a brain cyst - they have point blank refused to admit anything is amiss 😭

I'm so sorry to hear that. I hope he is in a better space now. It rips your heart out to see them suffer x