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

Good to know - thanks

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.

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.

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.

Thank you - a really helpful and kind post

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/

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.

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.

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.

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.

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.

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.

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)

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.

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.

I think there are lots of ways to support people and diagnosis is one of them. If you think he would do better without then just carry on. You will endlessly have to discuss “might he be autistic” so you will need to find a polite way of bypassing that discussion or you will lose a lot of time.

Thanks for your thoughts and I can see how my post might come across. I did post because I want to do what is best and my mind is changing from what I’m hearing.

You would be insane (in my opinion) to decline an assessment. If things start to go wrong at school he’ll be back of the queue to be assessed if you decline it now. He wouldn’t have help in the meantime without a diagnosis. By the time he’s assessed and support put in place it could have already all gone terribly wrong. You’re worried about him being judged but you don’t need to tell anyone the outcome of the assessment , or even that he’s being assessed.

Parent of a diagnosed autistic DS here.
DS is highly intelligent and in the right environment can “read” as NT.
maybe that is like your DS? Maybe that is why you are in two mind about the assessment.

Im sorry but not wanting an assessment is ableist.

if you are worried that people are not giving your child the opportunities and equal treatment that he deserves then they are also likely ableist. You sound concerned that he will be being excluded from opportunity on the basis of his disability if it is assessed and then known to others.

The problem with this is that your child, if AuDHD, is ALREADY being excluded from equitable access to opportunities because reasonable accommodation and appropriate parenting strategies are very unlikely to be in place. What’s worse is that your child will be needing to mask/not know where to go for support etc and may be at risk of burnout and/or developing MH issues and/or destructive behaviors as a teenager without these accommodations and understanding.

My DS was autistic before the assessment. There is research now indicating that there are bio markers - it is not “just behavioral” it is a genuine nervous system and neurological difference vs the “allistic” (NT) norm.

Get your child assessed and get yourself educated. You may need to educate others around your DS in order to protect their interests

I would think it's better to have a diagnosis in place 'ready' rather than wait for a problem or need, and then embark on what can be a very long process, even if you do go private.

You are being offered an autism assessment? Bite their fucking hands off!!!

My children were hugely traumatised (and permanently scared due to self harm) from trying to cope in a school which refused to support them without a diagnosis. A diagnosis we then had to fight for years to get.

If only I had recognised the signs of autism and fought to get them a diagnosis earlier their childhoods would have been so much happier and their futures so much brighter.

You need to get him assessed. I'm currently waiting for an assessment for one of my children. Been waiting two years so far. Their needs have got more significant in that time. They're excelling academically at the moment. 'At the moment' being the key phrase. My child will need significant support transitioning to secondary school. Although school support should be needs based, and this is the case in my child's primary school. A diagnosis makes it easier to obtain the support in certain situations and certainly is one less barrier to getting an EHCP should you need it. Why would you potentially want to make life more difficult for your child by not getting a diagnosis?

This is super helpful to hear, thanks for sharing

I knew my DD was autistic from a very young age but no one else saw it because she masked so heavily for everyone else. I’m secretly pleased that I’m the one she felt she could be herself with. Her dad and school both thought she was neurotypical with no issues as that’s the facade she put on for them. Star pupil at school in both academics and behaviour. Constantly trying to be the daughter she thought her dad wanted (doing sports etc even though she hates them).

As dad and I are divorced with 50:50 custody, I saw no point battling him to get a diagnosis and I just parented her as though she was autistic (low demand and being responsive to her needs - particularly sensory ones).

Fast forward a few years and we reached crisis point with her being unable to mask anymore when with her dad. Resulting in some scary situations with severe panic attacks and hyperventilation. Dad very concerned and rushed her for private assessment. Received a very definitive ASD diagnosis. I didn’t say I told you so 😜

DD now getting all the support she needs from both parents and school and is thriving in secondary school. She also understands herself more now which is the real benefit of the diagnosis. She now knows why she feels different to her neurotypical peers and is able to see the benefits of her autistic brain.

Personally I think it’s pretty cruel and potentially dangerous not to allow your child to have the knowledge of what neurotype they are. Especially when not being neurotypical can make life feel so much harder and if you don’t know why, it can have a devastating impact on mental health.

My DD is super proud of being autistic - she has a good understanding of all the amazing things her autistic brain can do (she’s sooo smart) but equally realises how it also makes her life harder in other ways and that this is not her fault

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.

This is not quite true. Teachers are pretty damn good at spotting, but not all autistic children are the same and teachers are not trained to diagnose. There are also various combos eg AudASD and sometimes ADHD and ASD can look similar.

However, he will (or at least, should) already be being given the same kind of support and/or adjustments as if the diagnosis had already been given. The staff will be every bit as aware as you are of his quirks (both positive and negative) and will have him pegged as "almost certainly ND, probably ASD" in their minds anyway. The assessment and diagnosis will not alter the way he is treated in school other than to make things easier for him and to flag up support that school (and you) may not have realised would help him. And you would almost certainly be discussed with frustration amongst staff.

All you achieve by refusing assessment is delaying an already protracted process and increasing the amount of time for him to become more noticeably different from his peers but without any support or explanation for him or others to be able to understand. It would be so misguided.

And if for some reason you do decide not to go ahead, please leave the list ASAP- there are literally thousands of children awaiting assessment with a projected wait of several years.