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

Have him assessed if it's offered. You can turn down any in-school support, but if you later decide he needs support and have turned down an assessment, you might struggle to get the offer reinstated.

I would get the assessment done as soon as possible.....my eldest son (19) has already been waiting for 18 months. He struggled through school but didn't tell me as he didn't want me to worry.....🫤

Do you know if the assessors automatically send copies of the report to the school or could we request not? I’m wondering if we go for assessment, but keep the outcome to ourselves unless we or he need it. Thanks for posting

Have the assessment. You don’t need to take any support after it, but if and when he wants/needs an assessment down the line, you don’t want to have to wait years if his mental health is deteriorating.

So wrong headed. I can't even read your self indulgent post to the end. Do you know how bloody difficult life is for undiagnosed neurodivergent teenagers in the mainstream education system? Put your child before your ego and have him assessed for goodness sake.

Take the assessment if offered, it opens up far more doors to him than not taking it.

You/he can then choose to take help/not take it as appropriate -without the DX and the official bit of paper, he will not be offered help he may well need and by the time you realise this, getting back on the horse to get the DX could take a very long time, to his detriment.

Oh that’s sad to hear. Do you think it would have really helped him to have a name for what he was experiencing earlier on?

The waiting lists are huge for a diagnosis - please do not give up your place on them. You choose who you talk to about the diagnosis, you don't need to tell anyone or everyone.

I've found being just open and honest about diagnosis is such a great way to embrace your child's strengths, their individuality and areas they need extra support in.

EHCPs are a long, heartbreaking, quagmire to get through...it isn't a case of just being granted one - so again, I'd really urge you to get your son as much support as you possibly can as early as you can.

Trust me, I've been through the process and continue to - don't turn away any support you can get.

If people judge him, then if they're close friends and family I'd find a way to talk to them about this...if they're not close to you then get rid.

Wishing you and your son all the best.

My son has a diagnois of autism. Received age 10. It was only when things began to fall apart drastically that they took him seriously in school. A diagnosis doesn't define you, however without it he wouldnt receive the support he so badly needs. I would never refuse assessment. And also no one needs to know regardless of outcome really. DS grandparents/aunts on one side of family have never been told. DS tells whomever he feels comfortable

I don't know the answer, but I can't imagine any school has time to go through info and suggestions for help in a report if the parents don't want it and the child doesn't need it.

Our son asked for an assessment aged 16. He wishes we had asked for one earlier. He’s very high functioning so we felt he didn’t need any more support that he’s was already getting so didn’t see point of assessment in that situation. He is forever being asked by friends and peers and wants to know.

If you think you might want it done before secondary school, I'd get it done now! All the processes involved seem to take forever, you might need to start EHCP application in year 3 in order to have it in place by year 5, which is when it is needed for secondary school. So ha ing a diagnosis sooner rathe than later is very helpful.

My ds 16 has been refused twice over recent years. . At 16 the wait is now 10 years where we live.

Thanks - that’s helpful

The report will go to you - it’s private medical information and will be up to you who it is shared with.

YABU and sadly, naive. There is a difference between getting a diagnosis and getting support e.g. an ECHP. My DS was on a waiting list for 2 years to get an autism diagnosis and I'm still trying to get an ECHP and support for him in school. He's now year 4. So if your child struggles in year 7 and you start the process then, you'll be lucky to get an ECHP before GCSEs. Maybe it's different in each area but I'm sure my council refuse nearly all applications automatically.

And if other people label him then that's their prejudice. You can only teach him how to accept and be proud of the way he is, not change the way other people think.

My daugher got hers at 17, after 2 years of waiting / assesments and tests. I wish we had got it years ago. High school was a miserable experience, culminating in 2 years ESBA.
Had we had the Diagnosis in Primary School, high school might have been a totally different experience.

I disagree I’m afraid. In a completely ideal world I think watch and wait is entirely appropriate. I think being reactive to issues as opposed to always trying to prempt them should be the norm.

But this isn’t an ideal world. Quite frankly, the LA don’t care that he is a whole, complex, unique individual. In some areas it is years upon years to go from identification of issues to EHCP being issued. Some kids are going through the entirety of secondary school stuck in a holding pattern.

I would crack on with assessment and share it widely. EHCPs are not always necessary. If school can manage him off the back of recommendations from formal assessments (diagnoses, OT, SALT, EP etc) then that might be all you need. Sadly, you need to be extremely proactive when dealing with SEN as opposed to reactive these days.

Honestly, people define children all the time, and not always nicely - shy, loud, aggressive, hyper... Much easier for him to have a name for times that he feels the odd one out, as that will happen
It's not like you need to tell everyone his diagnosis?

I'm late diagnosed (was in my forties) I wish I'd had a name to explain how I felt as a kid. The only people who know are my managers and a few close friends, but it has made such a difference. I rarely tell new people unless there's a specific reason I think they'd need to know.

Just get it done. From someone who is waiting for a late life diagnosis, as well as someone who knows people who were late life diagnosed, a diagnosis earlier in life would have been very welcomed. Do with it what you want, but given the waiting times are so long you might as well get it done.

I’d have him assessed now, the waiting list once he’s in secondary could take years and if he was to need additional help for exams (extra time etc) then it’ll be far harder if you haven’t got the diagnosis and if you wait until secondary for an assessment you’ll go back onto a waiting list and may not have the diagnosis in place before his GCSEs. If it’s not needed then there’s no harm done. He never has to disclose to anyone he’s diagnosed unless he chooses to.

My DD sounds similar to your DS, she’s in year 3, diagnosed ASD in reception. The only additional support she has is the teacher checking she’s understood instructions or if they’re particulary complex she gets written instructions broken down into steps. And we have a quick phone chat with her teacher every term which I find quite useful as it gives me a chance to ask about how she gets on socially, whereas parents evening is focussed more on learning.

I would take the assessment.

The problem with waiting until things have gone wrong, is then it's painfully slow just when you need it the most.

I don't think you need to tell everyone if they get a diagnosis. I'm pretty sure it was up to me to share any reports and I only shared the recommendations section.

I’m posting because I want to do what is best for my DS. I’ve had some helpful responses on here and they are getting me thinking.

Please do not wait!!! My nephew is now 16 and dealing with ASD, exams, hormones, first relationships and first jobs. Without his dx and the additional support it has brought the whole family would be on their knees.

@Brinkley22 yes I think it would have made school better for him. He's very bright but struggled socially. Just wish I had realised he was struggling so much. That I could have gotten him the help earlier