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

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?

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.

This. All day long.

I don't think it should be optional.

@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?

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.

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.

I’m so sorry @oakkiln

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 for your loss.

Suicide rates in autistic people are scarily high 😢

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.

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.

... 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.

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.

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.

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.

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

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?

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.

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.

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

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.

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.