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

[Brinkley22]

Hi all, I am curious for different views and opinions. My DS (year 2) has a differently wired brain and I would classify him as neurodivergent. He is enormously enthusiastic, lovable, curious, impulsive, friendly, with an infectious laugh among many other things. He has many strengths and also some things that take him longer than other kids to pick up; like picking up on social cues and managing feelings. He is doing really well at school and not needing any extra support.
He is on a (long) waiting list to have an autism assessment.
I know that these assessments are in high demand and that diagnoses of autism and ADHD can be incredibly helpful and important for getting children the understanding and support that they need. In no way am I suggesting that it is wrong or ill-advised to have an assessment.
However, I have noticed that sometimes he seems to be defined by others (especially those who know he is awaiting assessment) solely in terms of diagnosis and label. Whereas other people seem to be able to accept and embrace him as he is in his complexity and individuality.
I’m concerned that having a diagnosis might lead to other people responding to him in relation to assumptions and not as a whole, complex, unique and wonderful person. I also don’t want to deprive him of an important assessment.
What I would like is to be able to follow my DS’s lead and, should he wish to have an assessment at some point in the future, we do so then (maybe will have to go private due to waiting times). Or, if we feel that he needs an EHCP and/or additional support (for example prior to moving to secondary school), we do so then.
I’m wondering if anyone understands my rationale and/or has done the same? Or whether people feel strongly it needs to happen ASAP?
I really want to do what is in his best interests and what will help him to feel that he is just wonderful exactly as he is! I don’t want him to feel defined or pigeon-holed because of a diagnosis and I also don’t want him to be left feeling different to others and not understanding why.
Thanks in advance

@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.

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.

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.

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 agree with this.

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 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.

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'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.

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.

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.

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.

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.

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.

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.

Think you need to get over the feelings of stigma and concentrate on what might be in overall best interests. The wheels often come off around the secondary transition at which point you will wait 3 years for an assessment and possibly almost as long to get a watertight EHCP if he needs one (it usually takes at least one tribunal). At this point a diagnosis will be landing at the height of puberty and may cause issues with self identity. Better to avoid late reveals and embrace who he is in all it's wonderfulness as soon as you can.

You can request it not go to the school - have a chat with the assessors and talk through concerns. There can be reasons not to do the assessment (if you feel support isn’t needed) but frequently parents who don’t want a dx tend to be having difficulty accepting their child’s differences and this can be problematic for the young person. Think carefully about who you are making the decision for and ensure your own issues are not be prioritised over your child’s needs.

Get the dx. We were lucky as it didn't take as long as expected. Came through before y7 and boy did we need it. It's been essential in getting help at secondary. Still no ehcp though. Doubt we'll ever get one.

I think you're being a bit silly I'm afraid. I understand the not wanting to label. It's easy when they're little but you need this for him for teenage years.

I'm a lecturer and one of my students has no diagnosis but very much think she is autistic. She's struggling with understanding instructions and general organisation and other difficulties all the way through. She recently confided that she believes she's autistic but her parents had never supported her to get diagnosed. Even as an adult she was struggling to try and explore it because of their dismissal. "You're fine" and "you don't need labels" doesn't help the person. Understanding themselves does.

My year 3 son has just received an autism diagnosis and the assessors have recommended he is referred for an ADHD assessment too. I could have written most of this myself last year however over the past 6 months, he has struggled more and more with the growing expectations of school - he is not independent in any way, cannot do simple "normal" tasks like get dressed, but excels academically and is the kindest, sweetest, funniest boy I have ever come across. If you are thinking the time may come where your son needs an EHCP, a diagnosis is pretty much essential for this. Lots get declined after a huge wait time so the most evidence you have, the better.
A label does not define your son, and those people who act as though it does are not worthy of his time.

We waited 3 years for his assessment and a lot changed in that time. When your time at the from of the queue comes, I would really recommend getting it done and off your mind rather than looming in the background. The report was sent to us & the GP. I shared it with school off my own back because I want us all to be on the same page for the sake of my little man.

If school are advising to do it, do it.
the process of getting children an EHCP who need it takes years now, this is the first step. Best case scenario, your child doesn’t need funding for additional support as they progress through school, so you get a report and decide to ignore it in a drawer somewhere. Alternatively, if your child starts needing more support, you are one step closer to getting it at any point in their school career.

the government agreed to a 2.8% pay rise for teachers from September but have offered NO additional funding to cover this, meaning staffing will be further reduced, meaning accessing additional funds for your child will be imperative if they need it later.

for context, I am a teacher and in my year 2 class last year I had a pupil who would meltdown 40% of the time whose behaviours when dysregulated included throwing furniture at staff and pupils, punching, spitting and kicking. because his funding had not come through yet (the process took 18months) in the meantime school were expected to cover the £20,000 shortfall in funding staff and we simply couldn’t afford to. the current system is incredibly broken and children are suffering as a result of this every day.

PLEASE DO NOT DELAY WHAT IS ALREADY A LONG PROCESS, if you do it will be your child (and their classmates) whose education is affected.

i say this with kindness. Apologies for lack of punctuation

My now 18 year old has been waiting for years for her assessment. Pushed back because of Covid and now she's on the adult waiting list which we've been told could be another 3 years! She's struggled massively. Please take the appointment. It can really help when school starts as I'm sure others may have said. Otherwise there could be a very long wait as you've turned down one appointment. So many children I know have been in the system for a very long time and are having to cope without the extra support at school or even at home if needed.

OP, as a mother of an autistic 6 year old, do not wait. If you wait until you feel he 'needs' a diagnosis, it will be because he's not coping - and then you will be kicking yourself for not getting an assessment before. If he has needs, surely it's best to find out what they are and get support now?

No, the assessor will not tell the school. You don't have to tell the school unless you want to.

Along with an ASD/ADHD assessment, I'd also recomended you getting a SALT and OT assessment (these can be done fairly cheaply; my son's SALT assessment cost £200 for example). This will be more help in identifying possible support needs than an ASD assessment.

We had these things done for my son, and it opened doors for him. He now has an EHCP with lots of support and is thriving. We also get some DLA money which makes life a little easier for us (and pays for things like occadional psychologist sessions for him).

I think you'd regret waiting more than you'd regret getting an assessment done.

My sister is autistic (diagnosed when she was 3 or 4) and was fine at school until she suddenly wasnt. Her autism diagnosis allowed for a care plan to be quickly implemented and she was moved to a special school where she then thrived.

Please let them assess him so you have the evidence to get him an EHCP if he ever needs additional help at school. If he doesn’t need any extra help, that’s fantastic, but he might and it would be good to have the evidence and EHCP before the assessment/diagnosis process becomes distressing for him and you.

You should have control of who sees any medical reports.
you can also request to see child’s records from nhs, schools, etc (there are forms to complete)

Get the assessment and stick it in a drawer if you like.

It will be great to have if you feel you need it at some point. Better than waiting 2 yrs when you are desperate for school support ….

Better to have it now, than want it later & cannot get.

You might just also learn a few things that can help your child once you have diagnosis. More info is better than less. Try get a genetic test too …

Yes - that's a good point. We were also offered the opportunity to comment on the report before it was finalised. We asked them to edit some things (eg references I'd made during the assessment to neurodiversity in the wider family, and suspected ND of ourselves - my husband and I) because we were intending to give the school a copy of the report but wanted to feel comfortable with the information we were sharing.