To scream from the rooftops that getting an autism diagnosis is not a label

My ds has autism, in truth I wish he didn't as his life would be easier and he would be able to have more experiences or a fuller life (level 4 autism- what used to be called classical/ severe/ low functioning).

To me it is just a diagnosis, a label. It could be that it was coolitous or amazingism rather than the word autism, it wouldn't change anything or make anything for him better. I wish that we were able to have his input into whether he wanted to be diagnosed or crack on without as some people do get choice. He was diagnosed at two years old after being on a waiting list for about ten months and diagnosis was required at that stage to access specialist slt and sensory ot as it was still diagnosis based not needs based.

I think the difference with conditions like diabetes is that there are medical interventions/ medication that can help and by giving the wrong medication or not giving medication there can be serious consequences, so correctly diagnosing is paramount. With autism while there are interventions that can help such as ot/slt etc they're based on needs and presentation and in theory the diagnosis isn't really necessary, you don't need to know why. Whereas with diabetes you need to know someone's blood sugar is high and that is why they may act drunk or their blood sugar is low snd maybe flaking put. Sugar levels can be measured and monitored too. So I don't think the comparrison earlier in the thread is appropriate.

I have every letter known to man after my name at this stage and still get told I am labelling myself. This board is a disgrace with asd bashing threads too so sometimes it is pointless engaging but yes it is a diagnosis. Labels are for the twats that think otherwise.

Agree.

I think there's a fear of being stigmatised, whereas for some, "naughty" reads as "spirited"/ "independent"/ "strong willed", and weird reads as "unique" / "not one of the sheeple".

I do appreciate that but perhaps less would have mh issues if the school system suited them better.

I don't doubt that.

I do appreciate that but perhaps less would have mh issues if the school system suited them better.

A very high percentage of autistic adults are not in employment though. You paint a pretty picture but the reality is much harsher.

The issue I have is that the school system doesn’t work for nd dc but once in the work place, many people with autism will find their niche and flourish. I work with lots of amazing people and a high percentage are autistic - data analysis, medical consultants etc. fascinatingly different in their approach but wonderful and respected in their roles. We have a neurodivergent network and they are wonderful for feedback so long as you can take blunt and honest responses. The strengths of autism are not brought out in our school system though.

Indeed this.

I always knew there was something different about me. I knew I was "weird" in many ways. I never let on.

Weird is my descriptor of my own self. I don’t apply it to others as that is not my right before anybody starts having a pop at me. Is just how I feel about me and me alone.

I've done the recommended, by NHS practitioners, online tests. They came out yes, I am autistic and with quite a high score. When asked about it, I lied and said the opposite. I've experienced medical professionals trying to use me getting a little bit upset to override my wishes. I'm not giving them any more ammunition to use to control me. I'm functioning, highly so, and set in my ways with many coping mechanisms that I've developed in my five decades.

I don't want no label nor a diagnosis that will enable medics, albeit well-meaning ones, to take away my autonomy, blow my life to pieces and turn my private quiet existence to shit.

I've read the stories about autistic people being sectioned and basically tortured. Sectioned despite the fact autism, in of itself, does not respond to treatment designed for mental illness.

I find this so complicated as a teacher, because YES it can be a label but so can ANY OTHER INFORMATION about a child!

Not every child with dyslexia needs the same intervention, not every child with low confidence needs the same intervention and not every child with ASD needs the same intervention! Children are still individuals with individual needs regardless of ASD diagnosis or not

I think there is a fundamental misunderstanding of the term "neurodiversity" to assume that there is a norm and anything outside of this is divergent.
Neurodiversity describes all of us!

As an autistic person, I tend to find most things that neurotypicals say about autism to be irritating.

I have found my diagnosis helpful in some ways. I have found that my narcissistic mother uses it as a weapon i.e. if I challenge any of her behaviours she says “Well you think differently to other people…”.

Your poor DD. I hope you took it to the head and the awful child that called your DD that name got reprimanded!

@deepstarfish

What longer term implications exactly??

I have no idea, the point I was making is that your son has decided based on how that will affect him now, as a 13 year old. About how he would feel.

@deepstarfish

But who would do the feeling strongly that over rides the parents? Schools aren't interested unless the child's needs are unmet to the point they are causing fairly significant behavioural issues, no-one sees the same GP twice. Who would identify these kids in this scenario?

I have no idea. I'm allowed to believe in assessment being vital where anything is suspected though. I don't need to have all the answers to feel that way.

DD school would not listen to us when we highlighted self harm, suicidal ideation, hyper emotional etc Apparently, all of this was "normal behaviour" going from primary to secondary school. They had zero idea about masking and the energy this takes for a solid 6hrs.
Her autism diagnosis led to us starting an open dialogue and needs based support she needed at school. DD feels extremely embarrassed whether it's a label or a diagnosis. She was called a spastic recently by a peer. It's rubbish for her and I just want to take her pain away.

What longer term implications exactly??

I’ve heard this time and time again. You aren’t alone and it also makes my blood boil.

People who moan about those seeking ‘a label’ in disparaging tones almost always believe deep down that autism isn’t real, is deserving of pity, is an insult etc etc.

I have this battle with my ex who is thoroughly opposed to kids/himself being ‘labelled’. It’s absolutely maddening. He’s robbing himself and kids of the means of understanding.

But who would do the feeling strongly that over rides the parents? Schools aren't interested unless the child's needs are unmet to the point they are causing fairly significant behavioural issues, no-one sees the same GP twice. Who would identify these kids in this scenario?

@deepstarfish

but he has enough capacity to determine he wants to know more and wants the assessment.

He cannot possibly have the understanding of the longer term implications

I think they do to an extent. My 13 year old is being assessed for ADHD, having already been diagnosed with other conditions. We wouldn't be going ahead if he didn't want to do it, he could simply not co-operate. I'm sure he hasn't had deep thoughts about the nature of words and labels, but he has enough capacity to determine he wants to know more and wants the assessment.

The problem is not the word 'label' there though. The problem is ignorant parents with no understanding of their child's needs. I feel quite strongly if you suspect your child has any health condition or NDity that you should not have the choice but to have them assessed. If a parent said 'no thank you' to an xray for a potential broken leg, or for diabetes checks the SS would be involved. It should not be any different for autism etc

Generally children, ND ones even more so, don't have the capacity to make such vital decisions.

Being diagnosed helps to customise life for DS1 and to understand what he needs and makes conversation with school easier. He had a rough patch at 7 and was diagnosed at 9. Knowing relatively early gives us better odds of him not having a huge crisis as he goes through life.

DS2 is diagnosed with asthma. This helps him with prescriptions that protect his health and targeted check-ups.

While one is about mental welfare and the other is about physical welfare, both diagnoses are about protecting their health.

"Label" is often used to insinuate that the condition is not genuine and excuses are being made.
If DS2 was being "labelled" with asthma, it insinuates that it's not real and might be used as an excuse to not join in with PE rather than recognising it as a genuinely debilitating and dangerous condition. Autism if managed poorly can also be debilitaing, and potentially dangerous if mental wellbeing is really suffering.

I guess we all see and hear it in different ways and contexts. I'm glad it's a positive thing for some! I'll be honest and say I have only ever heard it said in a negative way from mainly parents'I don't want x y to be labelled' . It's good to hear it can be used in a positive way too

The whole point is that a diagnosis is
helpful and wanted by some. Not others. My ND child did not want a diagnosis. To them it was a label of being different. Yes they are still different
but to them it wasn’t ratified so was just how they were. It didn’t matter because all support given by school and doctors ( including meds) was needs based not diagnosis based.