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

Very similar to @ExtraOnionsmy dd1 was diagnosed at 17, after EBSA and being managed out of mainstream education. This has left a lasting impact on her mental health. All of her “issues” were put down to my age (young) and parenting, until she was diagnosed! She struggled socially from toddler age, but masked well at primary and was highly academic so school said she was fine! Until she wasnt.

DD2 we strongly suspected she was ND and she developed anxiety in Y2, we went through CAMHS twice but again because she was “ok” in school (again well behaved, compliant, academic) they wouldn’t support the referrals, basically their view carried more weight than ours. Then she hit Y7 and she wasn’t fine and the SENCO at secondary pushed for a referral for autism assessment. And she too was diagnosed and unlike her sister, it was still soon enough that it empowered her, knowing why the world was different for her. And as a mum, a slightly older, more experienced and frankly more jaded, I advocate for her, because it’s her need not my poor parenting.

Also agree with @Hibernatingtilspring people label all the time, whether it’s an official diagnosis or just a description of how we look or behave.

Locally it’s about a 6yr wait now, so we went privately because we couldn’t trust that a secondary school would make adjustments without one after previous experience.

The world has changed. Whether you want to accept it or not, a ND kid is different in so many ways to his peers. What you may see as delightful quirks, other NT kids typically will not- especially as they get older.

When I was growing up, the kids who I now realise were ND were just seen as being really weird. Especially in secondary school but even before then. I believe we would have been far more understanding/compassionate if we had realised they were actually ND.

My niece is 9 with diagnosed autism. We constantly reinforce to her that there is nothing wrong with being autistic. That she is wonderful and special. She will happily tell people she is autistic and explain to people what they means for her. Teachers were a lot less compassionate with her before she had a diagnosis.

If you want to do what’s best for him get him a diagnosis!!!!
If he is on the spectrum then he is on the spectrum whether you have it diagnosed or not so why not find out for sure.
By having it diagnosed you open so many more doors for him. My DD was the same and once she had the diagnosis it gave her so many more options and opportunities as the help was there for her.
She got the extra support at school when she needed it and for GCSEs she got extra time and a very small exam room. She was diagnosed at the age of 7. Her friend, who is similar to her has been waiting 3 years for an appointment and never got any of the support my DD did. If you don’t get the assessment now you run the same risk.
The report did get sent to school and also to the Dr but that wasn’t an issue at all. School asked for an appointment and asked what they could do. Originally it was nothing but when she did need help it was very easy to get as she was on their radar. We didn’t tell any friends for ages as there was no need. She - or we - never felt “labelled” and she found it helpful to understand, as she got older, that it was a genuine reason for seeing things differently sometimes which reassured her rather than worried her.
It helped outside school too as she got an Access card which means she does not have to queue or be around a lot of people in public places (she struggles with being too close to people without being able to move)

Definitely please get the assessment. It’s so hard to get and just because your son seems fine now, he may struggle later. My dd fell apart at secondary..don’t presume he will always find school easy.

Get him assessed.

If you think about it like any other illness or condition - why would you not want a diagnosis so you can respond and support appropriately?

The EHCP is an entirely different thing and you won't necessarily get one with a diagnosis. Similarly, you can have one without a diagnosis. It covers support in school and is based on how great the need is for support. Some autistic children don't need as much/meet the threshold while others get one prior to diagnosis due to the amount of support they need. My son has asperges and ADHD and needed support from the get go, he was diagnosed 2 years after the EHCP was set up.

People who treat him differently/label him/other are not worth your consideration and you mustn't base the decision of getting support for your child on their possible reaction.

The outcome will be like any other medical procedure in that it will be completely confidential and you can share the news as and when appropriate with whomever you like.

I agree with everyone else, life will be significantly easier for him with a diagnoses than without.

Waiting until he needs it is naive. The system moves far, far too slowly for that.

With regards to the school knowing, people who work with hundreds of kids over many years know the signs almost as well as people working in diagnoses do. The majority of his teachers will know already whether he has a diagnoses or not so I wouldn't worry about their attitude to him changing significantly.

The people who would judge your son by his label will still do so if he doesn't have a diagnosis. They'll just give him his own label:
Lazy
Weird
Stupid

Or a whole host of others. Because these people are pricks.

Get him the diagnosis for him, don't take it away because of them.

Hes doing OK at school... AT THE MOMENT. What about if he struggles the older he gets? Are you still going to think it was smart to decline the assessment then?

I have to say, this is bloody idiotic.

Keep him on the waiting list. By the time the assessment comes around your DC could well need it.

Moving up a KS in Y3 is often a huge challenge and I cannot see any negatives in getting him assessed. A diagnosis doesn't mean automatic intervention and help from the school - if only!! It just offers a pathway should you feel he does need help and support in the future. I think you'd be incredibly short sighted to close the option down for your DC.

Would you turn down an assessment for a heart condition because you didn't want to be labelled as a heart patient? Why deny your child the opportunity to get early intervention & support for a life long condition?

https://www.autism.org.uk/

https://www.ambitiousaboutautism.org.uk/

Do you know anyone who was assessed as an adult? Maybe if you did you might ask them what their teenage years were like?
I am sorry but I feel strongly about this. Your post about not wanting the school to have the report smacks of you feeling ashamed of his neurodivergence. If the world was safe and supportive to ND people I would say do whatever, but it's not. Don't hobble your child's chances in life out of some misguided belief that people in authority will respect his individuality and respond to it because they won't.

I think stay on the waiting list and have the assessment when your appointment arrives. If your son needs adjustments and help, it is far better to have any diagnosis sorted early then waiting until he's struggling and then being in a rush. Sometimes by putting small barely noticeable adjustments in place, you can help prevent bigger issues from developing.

Continue on the list for assessment, the school will already know he’s ND, a diagnosis just confirms and gives access to any necessary supports.

It’s your choice whether to tell family and friends, but again they probably are aware anyway.

As your DS gets older, he’ll be aware that he has some issues, he may already feel a little different to his peers, so an official diagnosis and extra supports can only help him.

A diagnosis is not going to change who your lovely little boy is, he will still be the same person but with more support if/when needed.

@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

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.

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’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.

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.

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.

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.

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.

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.