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

My mum said the same about not labeling dc and I hit the roof. A diagnosis isn't just a name for something. It's an understanding of what and why and how to help. Because of my son's diagnosis we understand him better and how to help him grow and develop instead of going about it arseways. And we were completely screwing him up unintentionally with the most amount of love and patience in our hearts because in reality we didn't have a clue what we were doing.

If you wait until he's struggling you've waited too late. You want him to start tweaks now so that he doesn't struggle or you know how to counter challenges when you meet them. As it turns out what we've done with ds is absolutely tiny but the difference is huge. I do think he is in a mild enough situation but we'll never know what it could have been if we'd kept down the wrong road.

I agree with a lot of posters.

While the EHCP process is theoretically needs based, I’m practice it often isn’t. In children with clear learning difficulties getting a needs based EHCP is more straightforward. But in neurodiverse kids with average/above average intelligence, a diagnosis is often needed to explain behaviours, unless you plan on waiting until the wheels well and truly fall off, which I would advise against.

... and I often think what a difference an autism diagnosis would have made to my brother. Back then he was just labelled "weird" and "naughty". He couldn't cope with day to day life because he hadn't had the support an autism diagnosis would have brought and he didn't know he was autistic so didn't have that understanding to why he was so different. Because of this from a young age he had severe anxiety and depression. He killed himself.

Thank god you are getting the responses you are. Please listen to them. You wouldn't say no to your son wearing glasses incase people make fun of the glasses.

I totally understanding your thinking, I felt similar when my DS (who sounds similar to yours) was that age. He's 18 now and it's one of my biggest regrets that I didn't fight more / harder for a diagnosis. Instead he spent all his secondary years masking - to the point I was relived as I thought he wasn't ASD after all. Let's just say I was terribly wrong and this has had an awful impact on his life. Please get your wonderful son assessed.

I’m so sorry for your loss.

Suicide rates in autistic people are scarily high 😢

For someone autistic and spending years being bullied because I had no name I find it selfish attitude. Years bullied badly at school because I was way ahead in subjects and couldn't figure a thing in others, to be name called, physical hurt etc because I was supposedly stupid because I thought or spoke differently. I will never forget my school years and my parents frustration because autism wasn't particularly looked at by the drs we saw and then the excuse because I was a girl etc..I was 34 when I finally got diagnosed and the relief actually made me cry to know Im not stupid or insane I'm made differently. This has made a huge difference and I got my first job easily once they realised my application filling wasn't perfect for a reason after years of trying. Because it wasn't great I got refused for years and finally after diagnosis best day ever I got a job and am great at it just wasn't at the first application filling.

I’m so sorry @oakkiln

I’m so sorry for your loss.

I find it infuriating when people say autism is some new thing that historically wasn’t diagnosed. I dread to think what the average life expectancy of someone with autism, even 60 years ago, was in this country.

Get the assessment! He will thank you for it later in life.
I understand where you are coming from though, my daughter has adhd and we are waiting for her autism assessment, we haven't shared her diagnosis with everyone, even some of my close friends don't know. She gets the help she needs at school and the support is there, we decline what ever we feel won't work for her.
We found school work began to get a lot harder in year 3 and 4, she was working at above average and average all the way until year the end of year 2, by the end of year 3 she was below average in some subjects and struggling in class, with her diagnosis we have been able to access help and the teachers are supportive at school.
If he is diagnosed with autism you don't need to shout it from the rooftops and it doesn't change who he is as a person.

@Lancrelady80
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

Where do you live that this is the case? Because that is absolutely not the norm. How do you think schools are able to finance additional support for ND kids with no diagnosis and/or EHCP?

This. All day long.

I don't think it should be optional.

Thanks everyone - this has been really helpful.
for a long time I was really keen to have the assessment and diagnosis - in fact I pushed for it (we’ve been waiting a long time!).
But just recently I’ve been feeling unsure.
Your comments and sharing of personal experiences of you and your DC have given me certainty now that we will go ahead with the assessment.
I’m sorry if my thread caused anyone distress, this was not my intention. I can see it led to strong feelings, which I think is understandable.

I'm 53 and was referred last year after a chat with my GP.

I was in the middle of yet anothe4 unexplained overwhelm. I've had plenty in my time.,was the weird kid at school reasonably academic but struggled with revision and things. I've winged my way through life but failed to thrive despite having achieved a BSc and an MSc without being unable to revise. It could have been so different if the doctors had listened earlier.

Diagnosis doesn't define the person, it allows the correct platform to be put in place for them to fly as high as they want. Without the support its like trying to flying with your wings clipped.

They wouldn't recommend an assessment if they didn't see some struggles. There's loadsof od 70's and 80's kids being diagnosed as a result of it being picked up in their kids. Some are now learning to thrive as a result of diagnosis.

sorry but this seems mental. You want to wait until he can decide? At what age will that be? It’s not about a label, it’s about understand what support and help he might need and giving that to him - if - assessment suggests he needs it. Research suggests early intervention is best, and if it’s something that will make his life easier in terms of how he experiences life - why would you wait to do that?

He either is or isn't.

Getting a dx won't change that. Get him the help he may need.

No, you get the assessment done now. He's doing ok atm, but that almost certainly will change as the years go on.

Put aside your own feelings and think of what's best for him for his own future.

Um, you do get that autism is a disability right @Brinkley22? It's really not a superpower (although it occasionally comes in combination with extreme abilities) or a charming set of quirks.

If you thought your child was visually impaired or had cerebral palsy would you avoid diagnosis through fear of judgement? Would you deny a deaf child hearing aids or access to BSL so nobody would know?

If he gets diagnosed you don't have to tell everyone about it if you're worried people will only see the label

Thank you @VivaVivaa you are so right about lack of diagnosis years ago. We can't share photos on here I don't think but there's a great meme I love which says

"There was no such thing as autism back in my day"

"Well, Mount Everest wasn't discovered until 1856 but I'm pretty sure it existed before then!"

I'm so grateful for the progress that has been made but there's such a long way still to go.

I’m glad you’ve decided to go ahead OP. You never know how things will change. My DS was ‘fine’ throughout primary school, but then basically missed his whole secondary education, with a diagnosis at the beginning of Year 8. Of course, that hopefully won’t be your case, but it certainly doesn’t hurt to have a diagnosis.

@oakkiln I’m so sorry about your brother.

@oakkiln sorry for your loss.

Op, it's better in the long run to get the assessment now whilst your son is coping than to be in a position later where you haven't got it but need it and have to wait 2+ years for a diagnosis. Hopefully your son may never experience the problems many neurodiverse children have following transition to secondary school but it will be better to have it already if he does. Schools are usually asked for info during the diagnosis process and I can't imagine that it would be a bad thing for them to be aware of. Nothing actually happens when you get an autism diagnosis - you get the diagnosis and are sent on your way. Nothing swings into action and you would have to be proactive in seeking extra support if you felt he needed it. I don't think there are any downsides to getting the diagnosis.

I’m so sorry to hear this. Thank you for sharing this

Good point

Ds was diagnosed at secondary school. It was a relief to him, because as he said "I'm not just the naughty boy. I have a reason for finding it hard."
He did also said "now I'm allowed to be antisocial," to which I replied "no, you know you have to work harder at it". Which gave us a point of where to start.

But it has been helpful to have the diagnosis. It's given him "permission" to admit things are hard. One thing I noticed fairly shortly afterwards that if he was going into a situation he wasn't comfortable, he wore a hoodie with the zip done up to his mouth and the hood pulled down. He looked a right thug🤣 but it was a barrier between him and the world that made him feel more comfortable. As soon as he was comfortable, it came off.
But doing that, meant that he could face situations he'd either have avoided or would have come across as abrupt and rude because he couldn't cope well with. And that is a great thing. He never did it before diagnosis - it was "permission" to adjust to the situation.