AIBU for declining autism assessment (at the moment) for my DS

My daughter was just diagnosed yesterday. They said it was optional whether the report was sent to school and GP. The report is ours to do as we see fit. They also offered to omit any bits we weren't comfortable with the school seeing.

Wow, how incredibly unsupportive. It is very evident from the post that the OP has her child's best interests at heart and is only looking for advice on how to navigate the situation. What a horrible person you are.

Get the diagnosis. He’ll need it at some point to get the support he deserves- the gap will widen as he gets older and he may need the support in secondary.

Get it now while you can.

Please, as the parent of a child who had a late diagnosis and no support I’ve seen the consequences. It wasn’t pretty.

What @TillyandFlorence has just said is so true.

An assessment won't take it away- but it will make getting different types of support a little easier.

My DD has the same thoughts about herself as @TillyandFlorence .She has been seeing the counselling team in school and had just been triaged by the CAMHS counselling team. She is now on a wait list for CBT.

She knows she's different. She knows she's left out. But at least she now has a bit of an understanding why and we can find techniques to support her.

My friend never got her son tested as he coped, all the way through school and college. University has been a disaster though and the massive change had been his undoing.
The thing with being ND is sometimes you cope, until you don’t and it all comes undone.

My son is currently a year and a half into a 3.5 year wait for assessment. He is 8. I had absolutely no idea he was neurodiverse as a toddler, things only became obvious at school (in fairness he had very little nursery time due to covid lockdowns). He never showed any of the traditional “signs” except being very shy and never greatly liking nursery- which again, we put down to lockdown.In the last few years he has begun to struggle massively and it’s taking its toll on him. He is very high functioning but is now riddled with anxiety and school avoidant. A diagnosis opens door to supports that are absolutely vital for ND children and there are long term implications to input being delayed. I would definitely stay on the waitlist just now- as much as you don’t feel your son needs support at this stage, it will make it so much more easily accessible to him later on should he need it. So much can change in a few years.

I'm so pleased you have decided to go ahead with the assessment.

I head a school for children like your son and the damage that has been done to them before they get to us is truly horrific.

Getting an EHCP can be an awfully long process, with potential tribunal appeals to force the LA to carry out an EHC Needs Assessment, then to agree to issue an EHCP and then, again, to get the content of the plan right and name a suitable school.

You really don't want to delay the process if at any point your son needs an EHCP in order to cope at school.

The process of assessment and diagnosis can be an emotional rollercoaster for parents so be kind to yourself and make sure you take the time you need to process the outcome. It was six months between autism being suggested for my daughter and me being able to mention the word in everyday conversation.

I hope your DS continues to thrive and that a diagnosis serves only to help him understand why he sometimes feels different from his peers.

OP it's been completely life changing for DS, it meant he got the interview questions in advance for the perfect job for him - and got the job.
At secondary school it meant he could take all his exams in a small room of 10 rather than jammed in with 250 other students.

Don't wait for the wheels to fall off before you start the long process to get a diagnosis, get it as soon as you can. It's often much easier for a younger child to accept and helps them understand their differences.

I think they've changed that about the armed services. At least ds was told that.

The ECHP is meant to be based on needs, not on diagnosis, so it's great if your school has done that, but a lot won't, or at any rate it's easier to push with a diagnosis.
For ds, he hasn't needed an ECHP, but it meant that having a diagnosis bumped him up the list for testing various things, which ended with him being entitled to use a laptop both in lessons and for exams. In one subject that took him up 4 grades. Yes, 4 grades from a 4 to a 8. That's worthwhile.
If he hadn't been diagnosed, then he'd have been way down the list because he was achieving okay, getting 4s and 5s, so he didn't need it in the way those getting 2s and 3s did. For the school, that doesn't make much difference. For him, it's huge.

This. But also to add, he'll label himself too. I'm a late diagnosed-autistic and I labelled myself as unlikeable/unloveable, weird, different, not good enough, shy etc.

I wasn't any of those things actually, I was just autistic.

I agree with this.

Be a parent. Your child needs you to help. Of course you get an assessment if it’s offered, because it’s your job to look out for your child and more information might help you do that.

I’m so glad you’re listening to these responses, OP, but it makes me so sad that you were (even if it was buried) ashamed.

My parents were and are the same. I have ADHD, diagnosed in adulthood, about 12 years ago. They don’t believe my diagnosis, think neurodivergence is something to be embarrassed about, have no interest in learning what it actually is, and were extremely offended when I told them it was highly heritable and tried to say that their least favourite relative must have been the one I got it from, if it’s even true (I often hear that they don’t believe in that “ADH” thing).

I have a child who almost certainly has ADHD and my father’s response was to not get him assessed as it would “label” him.

I have given up on them, but it also hurts. My teenage years were a mess. Truly, a mess. And they ignored it completely, told me to just try harder. If I had someone who understood me - and helped me understand myself with empathy and respect - my entire life would be different.

Please don’t be embarrassed by your son. I know autism was in the press for all the wrong reasons for a long time (the vaccines debacle), but it isn’t like that anymore.

Well I will be the lone voice here. My son has autism and getting a diagnosis did not help.

He did not get any additional support in education as the ECHP was already in place.

What it did do was limit careers he could go into. No armed forces which he had wanted to after he had been diagnosed. 12 years fighting for diagnosis if I had my time I would have saved the energy and time.

@Glorybox2025 is spot on.

My DD was qwerky at primary school. Everyone smiled and laughed with her.

When she turned 8 it was horrendous- her anxiety started.

We fought hard for her assessment- we hoped we would never have to use the words 'she's autistic- can you make allowance '

Secondary school can be a lonely place for neurodivergent children. If you have an assessment you at least have proof. My daughter had to have a full on panic/anxiety episode involving the head and numerous teachers before they accepted that she was autistic. Now we have the actual 'statement ' it makes life so much easier for her.

In the kindest way, please let your child be assessed.

Ds was diagnosed at secondary school. It was a relief to him, because as he said "I'm not just the naughty boy. I have a reason for finding it hard."
He did also said "now I'm allowed to be antisocial," to which I replied "no, you know you have to work harder at it". Which gave us a point of where to start.

But it has been helpful to have the diagnosis. It's given him "permission" to admit things are hard. One thing I noticed fairly shortly afterwards that if he was going into a situation he wasn't comfortable, he wore a hoodie with the zip done up to his mouth and the hood pulled down. He looked a right thug🤣 but it was a barrier between him and the world that made him feel more comfortable. As soon as he was comfortable, it came off.
But doing that, meant that he could face situations he'd either have avoided or would have come across as abrupt and rude because he couldn't cope well with. And that is a great thing. He never did it before diagnosis - it was "permission" to adjust to the situation.

@oakkiln sorry for your loss.

Op, it's better in the long run to get the assessment now whilst your son is coping than to be in a position later where you haven't got it but need it and have to wait 2+ years for a diagnosis. Hopefully your son may never experience the problems many neurodiverse children have following transition to secondary school but it will be better to have it already if he does. Schools are usually asked for info during the diagnosis process and I can't imagine that it would be a bad thing for them to be aware of. Nothing actually happens when you get an autism diagnosis - you get the diagnosis and are sent on your way. Nothing swings into action and you would have to be proactive in seeking extra support if you felt he needed it. I don't think there are any downsides to getting the diagnosis.

I’m glad you’ve decided to go ahead OP. You never know how things will change. My DS was ‘fine’ throughout primary school, but then basically missed his whole secondary education, with a diagnosis at the beginning of Year 8. Of course, that hopefully won’t be your case, but it certainly doesn’t hurt to have a diagnosis.

@oakkiln I’m so sorry about your brother.

Thank you @VivaVivaa you are so right about lack of diagnosis years ago. We can't share photos on here I don't think but there's a great meme I love which says

"There was no such thing as autism back in my day"

"Well, Mount Everest wasn't discovered until 1856 but I'm pretty sure it existed before then!"

I'm so grateful for the progress that has been made but there's such a long way still to go.

If he gets diagnosed you don't have to tell everyone about it if you're worried people will only see the label

Um, you do get that autism is a disability right @Brinkley22? It's really not a superpower (although it occasionally comes in combination with extreme abilities) or a charming set of quirks.

If you thought your child was visually impaired or had cerebral palsy would you avoid diagnosis through fear of judgement? Would you deny a deaf child hearing aids or access to BSL so nobody would know?

No, you get the assessment done now. He's doing ok atm, but that almost certainly will change as the years go on.

Put aside your own feelings and think of what's best for him for his own future.

He either is or isn't.

Getting a dx won't change that. Get him the help he may need.