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

Reminded of two friends from our primary, goes back 10 yrs …

Friend 1: her son ND, amazing school in our area, would only take children with “confirmed” asd diagnosis. And fu DC ng gave the diagnosis and needed to wait a year.

Friend 2 (NHS nurse) her son had asd diagnosis, but she thought this other sen school would be great fit but they would not take asd. She did not tell them asd diagnosis and he got in. She wanted him to model behavior of kids without communication issues…

OP before my DS got his diagnosis of ADHD and was then offered meds which helped him so much he had a miserable time at school because the teachers kept complaining he was naughty. After the diagnosis and meds he went from set 3 in Maths tonset 1 within a year and he said the teachers didn't get angry with him all the time. Get the assessment if you have been offered. You'll get the report and you share it with who you need to to help your DC get any support they need. If they need an EPC plan later the assessment will aid the process.

Have the assessment. My nephew was referred when he was 4, he wasn’t diagnosed until he was 9. It’s a long process and your son could miss out on additional support that he may need if you turn down the assessment

It’s not about giving him a label,

it’s about giving him the support he needs it’s about getting the funding for him. It’s about getting the support in place.

it’s about facing up to reality. the doors can open up if he got diagnosed for the right reasons. He very well may drown education wise and start to struggle in later on life if he’s not diagnosed early. You may face struggles that if things are in place wouldn’t happen etc

I started the process off when my child was in year 2. They were given a diagnosis in year 4.

Getting an EHCP and appealing the contents took around 18 months.

A year later my younger child (who was diagnosed aged 9) had a 2.5 year wait to get a decent finalised EHCP. I started the process in year 5. My younger child didn't finally get their specialist placement until year 9! In between all that, they missed 6 months if year 6, six months of year 7 and all of year 8.

It is going to be so much harder (than it was for us) for your son's generation to get an EHCP. I've often said to my inner circle that I feel so sorry for those kids and families behind us. If we thought we had a battle, it'll be nothing like those coming through now.

The other thing to think about is that he WILL think he is weird/naughty/bad/that there's something wrong with him eventually, unless he has a good understanding of himself and that he feels different because he IS different.

But the most validating thing is to know that it's not your fault and there's nothing 'wrong' with you.

It is better to slowly introduce the idea of autism now through reading books and mentioning how autistic people are amazing because they think 'outside the box' and have amazing brains. Seel it as a positive thing and deal with the rest later. Ay his age, he will accept himself for who he is and being autistic won't be a bad thing. While he's this young, you can put a positive slant on it.

If you wait until he's a teen, you risk him refusing assessment because he doesn't want to be seen as being different.

Get that assessment done!

You don't have to tell anyone about it if you don't want to. You can ask the NHS not to write to school or say that you don't want that information to be shared and explain why.

Both of my kids crumbled on the transition to year 7 mainstream despite being more than capable from an academic perspective.

Many neurodivergent kids struggle when they hit year 7. You're taking a massive risk if you don't get things in place sooner, rather than later.

My Ds was diagnosed over lockdown.

i only ever really shared it with school - he already had an ADHD diagnosis .

In all honesty it helped the school understand him - it opened doors when he wasn’t coping .

it also helped him . He knows he is different and actually helps him understand that .. You see your child through different eyes ..

school definitely got more challenging the further he went through school ..He was also more challenging in school too .

You aren’t doing him any favours not getting him assessed.

My best friends son is 30. He was only formally diagnosed with ADHD & autism a few years ago. He wishes it had been done years ago. Having a diagnosis has massively helped him

Yes! This is absolutely true

You have to trust teachers won't define your son by his condition. They will be able to help him better if they understand his condition and needs, as will his family members.

This. When he reaches the point where he can't cope and she's looking around for help and it's years away, she might reflect on this post.

I wish I'd had the luxury.

I could have described my ds exactly as you have at his age, everything changed in Year 3. He began getting bullied (by children and some adults, one horrible teacher in particular) when his differences weren’t seen as ‘endearingly quirky’ anymore. He developed horrific OCD which we are still battling now at age 15.

He has been suicidal and is now medicated to help with the OCD, it controls his daily life.

I don’t know where we would be without his diagnosis, it helps him to understand himself, answered many questions he had etc him being on the waiting list led us to CAMHS (which I know some people hate and have poor experience of) but we’ve had a wonderful case worker who has saved my little boy. We also have the most supportive CBT therapist currently who tries her best weekly to help ds with his OCD symptoms.

My ds was referred for diagnosis age 5/6 and ended being in a group referred to as ‘the lost list’, children who were awaiting an assessment but somehow slipped through the net and were forgotten about. Ds eventually got his assessment at almost 12.

Nobody knows about ds’s Autism diagnosis except the people he wants to know including minimal family members. He finally made some lovely friends and he came home one day and told me he had told a couple of them he’s autistic and he said their reaction to it was lovely, kind of a ‘no shit Sherlock/we don’t care’ way.

There is not a huge amount of support out there in the day to day, there is no huge change in your child, the family or everyday life the day after diagnosis but I do believe it is important. I know some people see it as a label but we’ve never seen it that way, your child is still the same person they were before diagnosis. Ds has a reduced timetable at school (it was that or drop out completely) and has certain passes in school that help him while he’s there.

I would not refuse an assessment especially now when the wait, I’ve heard, is horrendous. You never know when you will need the diagnosis. You don’t have to tell a soul but it’s there if/when you need it.
Ds’s diagnosis was forwarded to our GP and his paediatrician. It was not sent to school, I decided to send the ‘short’ paperwork confirming diagnosis to his head of year but did not share the ‘long’ paperwork due to all the sensitive, personal information in there. We previously had a confidentiality breech at primary school so I would never trust another school with such sensitive information again.

Best of luck OP

I agree.
The waiting list for assessment is years.
OP are you seriously thinking you’ll wait until it becomes an actual problem, and then get a diagnosis? Your son is in year 2. If you stay on the list, he’ll get his assessment and diagnosis before he goes to secondary school. If you wait till, say, year 7, when the problems really start for ND children in my experience, he’ll be getting his diagnosis when he’s studying for GCSEs, in the throes of puberty, having gone through years of being misunderstood.

There are lots of people who feel that having a label has held them back in life but there are also people who are so thankful for it.

As his parent you know what’s best and if you think having that diagnosis isn’t needed for right now, then that’s fine.

However, I will say that getting an assessment is incredibly difficult and it may be worth getting it whilst you have the chance.
You don’t need to do anything with the diagnosis just yet.

The wheels come off very fast with autistic children.

It took a couple of months for my DD (AuDHD) to go from loving school to being an anxiety ridden mess who refused to go and self harmed.

Get the assessment before the wheels come off. Then with a bit of luck you can fight for support and maybe the wheels won't come off.

Taking all blades out of your home so your child can't harm themselves isn't fun.

In year 2 children are incredibly accepting of difference. This goes away throughout ks2 and the only thing teens want is to fit in and they will bully mercilessly anyone who doesn't.

A kid with an autism diagnosis is usually spared that.