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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

High functioning asd and no interest in a diagnosis.

251 replies

coodawoodashooda · 22/09/2021 19:04

Has this worked out for anyone? Does anyone wish that this is what they opted for?

OP posts:
TableFlowerss · 22/09/2021 23:15

@IvorHughJarrs

I know somebody well who works in children's mental health at a highly qualified professional level. They agree that, if they were a child now, they would be diagnosed as on the spectrum but feel that they have probably succeeded more by not having a label than if they had been diagnosed. They are, however, far more intelligent and high functioning than most of us
That makes no sense. How could a diagnosis if ASD make it less likely someone is successful?

A label/diagnosis etc …. doesn’t change the person or their capabilities.

If anything, it should A- help them understand their difficulties and B- in many companies these days, they offer candidates with a disability a guaranteed interview, so to be more inclusive.

ClumpingBambooIsALie · 22/09/2021 23:21

@PicaK

Well it's a thing in the asd community to accept people who think they are asd - because it's pretty usual for if you think you are to end up with diagnosis. I'd join an asd fb group. Read the joyous moments everytime someone gets diagnosed - their joy, their relief. You don't have to but most find diagnosis enhances and improves their world.
It's more complex than that emotionally for a lot of us. My diagnosis came with a hefty side helping of "oh — so there really is something irreversibly different about me that I'll never be able to completely fix" and a sprinkling of "but what if I was accidentally lying during the assessment?"
SingingInTheShithouse · 22/09/2021 23:56

I know somebody well who works in children's mental health at a highly qualified professional level. They agree that, if they were a child now, they would be diagnosed as on the spectrum but feel that they have probably succeeded more by not having a label than if they had been diagnosed. They are, however, far more intelligent and high functioning than most of us

I can relate to a lot of this. My DD isn't diagnosed because she pulled the plug just as we were finally getting somewhere. We had our GPS backing, DD came to us asking to look into ASD at 14 & by 17 refused diagnosis. Having looked into it with her & joined a ASD parenting group I realised that we missed it. Partly because she's very high functioning, was ahead in all of her mile stones etc is very intelligent so does well in school, so there was never any worries at school etc. Friendship issues later yr 4/5 onwards, but by then she had other diagnosis that made her "different". Plus her quirks weren't so unusual in me/my family or DHs either.

To the OP...

Learning about HFA in high functioning girls for DD, I can so see that I was far more of a classic case for assessment in school than she was. I also did well, but I didn't speak till about year 8 & I was the weird kid, working on solving perpetual motion, obsessed with manatees, digging in the tip to collect vintage bottles & winning adult art contest etc when in primary school. Plus I remember the fights with DM over clothes & shoes & scratchy sheets

I can see that I have definitely experienced symptoms of ASD all of my life, though it could be due to the things too, but I've never let it stop me. I've had a good & successful career as a designer , enjoyed partying with good friends that I still have decades later, but realise that like I see DD doing now I found the fabulously oddball alternative crowd. Travelled the world, many times on my own & enjoyed every minute of the freedom of lone travel.

Unless living with a partner, I've always needed to live on my own though, I needed a quiet boat hole or I got exhausted & I'll very quickly. I realised at 21 when moving to London to live with with 4 girlfriends & lasting only a week before I had to make my excuses & leave, that I needed my own space.

Diagnosis would have made no difference to me back then, there would have been no support & ignorance would have meant the diagnosis would have likely held me back.

Now though, I'm not so sure. I'm disabled, I hit burn out shortly after DD was born & never fully recovered, later diagnosis with EDS & PA as is DD, so I didn't think too much of it other than I'd managed until I hit a major stressful time around DDs birth & couldn't understand why I couldn't pick myself up again as I'd had both of these genetic conditions all of my life & managed just fine, even if I did realise that I'd always had some more minor symptoms.

Reading about autistic burn out though, I can relate to a lot of that too. Maybe knowing about it all sooner & working with it better, might have saved me some health issues. Diagnosis wouldn't have helped though, the knowledge would have.

There is a lot more support & acceptance now though, so actual diagnosis might be more helpful to you now than it would have been for me.

I'm interested to see what others have to say though, as a diagnosis would certainly help us with DD, as we could hopefully get help with her sometimes very difficult behaviour. She's refused, which is her prerogative, but we do worry that she misses out on support too. But I was okay, so she may be too & she already has to work around her other diagnosis & gets some support for that, so hopefully she will be more sensible & won't burn out

SingingInTheShithouse · 22/09/2021 23:59

Bolt hole, before the pedants jump on me... urgh, autocorrect 🥴😂

belfastlass · 23/09/2021 00:04

I guess you mean Aspergers? (old term but still widely used)

I have it. Initially self-diagnosed from extensive online research. The formal NHS diagnosis which confirmed this took two years (yes 2!) to arrange, by which time the initial enthusiasm for diagnosis had waned and I'd already come to terms with it.

Basically, if you're pretty sure you have it, then diagnosis is a formality. It's only really worth getting if you're going to look for things like adjustments at work/school, which will likely require proof. Though as others have pointed out, discrimination exists, and by being open about it you could invite being side-lined (e.g. on a job application). In a situation where they have to deal with you e.g. a school, then it may help in getting adjustments (e.g. extra time in tests etc).

PermanentTemporary · 23/09/2021 00:05

A side issue. My niece has been diagnosed as an adult and we as the extended family have really felt it opened our eyes to the possible neurodiversity in our family. There's an older teen and another adult who may pursue a diagnosis, in their cases ADHD rather than autism. And another adult who has decided not to go for diagnosis. I'm just struck with them that they finally seem to be in a happy place after decades of struggle. Could an earlier diagnosis have helped with some of that struggle? Possibly.

BlankTimes · 23/09/2021 00:13

@PumpkinsAndCats

My nephews school have been saying for a long time that they think he is autistic but my sister is not interested in a diagnosis as he is very intelligent and what would have been known as “high functioning” so she does not want to pursue a diagnosis (these are her words) so yes not everyone seeks diagnosis
Many neurodiverse conditions have traits in common, school cannot diagnose nor should they be advising a parent they think a child has a certain condition.

Many neurodiverse conditions have several co-morbids.

I think your sister is misguided thinking that his academic achievement means he'll be happy.

Has she ever thought about how your nephew feels day-to-day, wondering why he is different, not knowing why he's different, wanting to fit in and not knowing how, seeing the world like a place where everyone knows what to do but he was never given the instructions?
Maybe ask her to read this thread.
www.mumsnet.com/Talk/am_i_being_unreasonable/a4309176-To-ask-what-its-like-to-be-neurodiverse?msgid=109547930#109547930

Yummypumpkin · 23/09/2021 00:14

Diagnosis as an adult goes like this:

Phase A - feel liberated, everything makes sense, have some easy access tools to explain self to others, everything makes sense

Phase B - start exhibiting more symptoms...you're living your diagnosis. Suddenly it is you. You feel worse than ever. Some of the conversations you had in phase A you regret. You feel shit.

Phase C - haven't got there but I guess you feel better.

If you can cope and don't need a diagnosis, don't seek one.

If you're really unhappy and struggling, it's worth working through it properly.

None of that is remotely related to high functioning. Its about whether your condition is limiting your happiness and ability to realise what you want in life.

PumpkinsAndCats · 23/09/2021 00:16

Schools definitely can as they school referred my son for an autism assessment, they didn’t say he has it they asked to refer him. She definitely won’t get him diagnosed, he is 15 now and they’ve mentioned it a few times over the years.

DoesHePlayTheFiddle · 23/09/2021 00:22

I don't feel worse after my diagnosis. I'm a couple of years in and it's still absolute joy. You don't need a diagnosis to know the truth, but you might need one if you want other people to believe you.

coodawoodashooda · 23/09/2021 07:23

@DoesHePlayTheFiddle

I don't feel worse after my diagnosis. I'm a couple of years in and it's still absolute joy. You don't need a diagnosis to know the truth, but you might need one if you want other people to believe you.
Thank you. Thats a very helpful perspective. Can you help me understand what you want other people to believe?
OP posts:
coodawoodashooda · 23/09/2021 07:24

@Booboosweet

How do you know it's asd if it's not been diagnosed?
Exactly.
OP posts:
Oblomov21 · 23/09/2021 07:35

I feel differently. It was a relief mainly to me to get Ds1's diagnosis because I'd been told he wasn't and that I had munchausens. So I felt vindicated. But it's changed little, we never got any extra help, other than me immediately going on an early bird course, which helped me.

Nothing since. It's only helped us on being aware of his traits and tendencies and placating them at times. but that's no different to normal parenting or even what I continue to do to myself as an adult, because I'm a great believer in constantly smoothing your rough edges and working on any extreme traits, or questioning your default tendencies.

So with that in mind, you could do this without a diagnosis. It's not the end of the world if you didn't pursue.

coodawoodashooda · 23/09/2021 07:36

@Yummypumpkin

Diagnosis as an adult goes like this:

Phase A - feel liberated, everything makes sense, have some easy access tools to explain self to others, everything makes sense

Phase B - start exhibiting more symptoms...you're living your diagnosis. Suddenly it is you. You feel worse than ever. Some of the conversations you had in phase A you regret. You feel shit.

Phase C - haven't got there but I guess you feel better.

If you can cope and don't need a diagnosis, don't seek one.

If you're really unhappy and struggling, it's worth working through it properly.

None of that is remotely related to high functioning. Its about whether your condition is limiting your happiness and ability to realise what you want in life.

This is also very helpful. Thank you.
OP posts:
coodawoodashooda · 23/09/2021 07:38

@belfastlass

I guess you mean Aspergers? (old term but still widely used)

I have it. Initially self-diagnosed from extensive online research. The formal NHS diagnosis which confirmed this took two years (yes 2!) to arrange, by which time the initial enthusiasm for diagnosis had waned and I'd already come to terms with it.

Basically, if you're pretty sure you have it, then diagnosis is a formality. It's only really worth getting if you're going to look for things like adjustments at work/school, which will likely require proof. Though as others have pointed out, discrimination exists, and by being open about it you could invite being side-lined (e.g. on a job application). In a situation where they have to deal with you e.g. a school, then it may help in getting adjustments (e.g. extra time in tests etc).

This is my main concern. That it will give the school a bigger budget.
OP posts:
Nillynally · 23/09/2021 07:41

My husband on finding out it was likely he had asd, said it made him feel less weird to know there was a reason for his behaviours. He never got a formal diagnoses but just the realisation that that's what it was was such a relief for him.

coodawoodashooda · 23/09/2021 07:45

@Nillynally

My husband on finding out it was likely he had asd, said it made him feel less weird to know there was a reason for his behaviours. He never got a formal diagnoses but just the realisation that that's what it was was such a relief for him.
Yes. I think this is the approach i prefer.
OP posts:
Meatshake · 23/09/2021 08:02

I felt a lot more confident and secure when I was diagnosed mid thirties.

It allowed me to frame my life as "why haven't I achieved so well" to "look how well I've done with a disability and no support".

ThePontiacBandit · 23/09/2021 08:15

I realised I was probably Autistic after reading a thread on MN. Personally I was never one who could settle with the “maybe” part of it, I needed to know for sure. Went through NHS assessment (long wait) and was finally diagnosed in my mid 30s. I cried with relief when I was diagnosed. It explained so much.

After diagnosis I did go through phases, almost similar to the phases of grief: denial, anger, bargaining, depression, acceptance. There were times when I was unsure if the diagnosis was right, times when I felt angry that I waited so long to realise I was Autistic, times when I raged that I wasn’t given the support I needed in the past. I agree with the pp that once I was diagnosed I did embrace it more. Once I had a certain level of acceptance, I “allowed” myself to be more Autistic after years of masking. I have hobbies that suit me (colouring and crochet mainly). I’m pretty comfortable with it now. I will disclose where I feel comfortable. I’ve even joined a local gym project aimed at Autistic women where I weight lift which I love!

In summary, for me, speculating wasn’t enough. I had to know. I’m really glad I do, I’ve never regretted my diagnosis. Maybe I have been treated differently but I was anyway, I was different with or without the diagnosis. So yeah, I’m glad I found out.

TastyToastie · 23/09/2021 08:17

I'm surprised to see posters saying "why wouldn't you?". It seems obvious to me that some people don't want to go for assessment and that is totally up to them. In our experience diagnosis changes everything and nothing, and neither of those is an exaggeration.

For adults, if you have "problems to solve" such as being overwhelmed at work, depressed, anxious, very self-critical or just feel you need to know then a diagnosis can help. But for people like my husband, who has arranged his life very nicely thank you, he just has no need to know either way. He knows who he is as an individual, and it suits him to live with a "maybe". For our son his diagnosis was absolutely essential and the right thing, and I'd be tempted to say it's something you should pursue for a minor. But adults, not necessarily.

PileOfBooks · 23/09/2021 08:21

I do feel with children its a disservice not to get an assessment. Especially for girls who may present later. It makes a such a difference to be able to read about why you are wirrd the way you are and it can be empowering to work with that. Im phrasing it wrong but it can make so much difference. All too often I read stories of adults who never quite got why they didnt fit/couldnt do xyz and then felt a failure etc - it can so help to play to your strengths/make adjustments etc.

TractorAndHeadphones · 23/09/2021 08:34

If it’s a child absolutely get a diagnosis - as education can help with reasonable adjustments + DLA. A family friend’s daughter got diagnosed with ADHD and gets extra time in exams etc.
No other intervention apart from diagnosis. She doesn’t have many issues as her environment really suits her so a diagnosis changes nothing. If she was out of uni it wouldn’t make an iota of difference.

I went for a diagnosis because I don’t like ‘maybes’ (and I can afford it). I helped myself well enough by implementing tips found online so there was nothing left for them to do really. Maybe medication would help a bit but as I’ve arranged my life to suit me I see little need for it now.

LittleOwl153 · 23/09/2021 08:53

I assume by talking about a school budget you are indeed talking about a child. And yes it can have impacts on budgets but also in the help they can obtain exams etc.

However even if diagnosed as a child you do not need to put this on job applications. Or share with the adult world if you do not wish to. I am dyslexic... none of my colleagues know - they don't need to. But it helped me in school to get good grades I wouldn't have got otherwise. A diagnosis is like any other health issue. It's a label which can help understanding but only you/the diagnosed can choose when to wear it as a badge.

PileOfBooks · 23/09/2021 08:58

My daughter was able to read books about other autistic teens and tiktoks etc and its really helped her. We have less meltdowns and are better understanding of triggers. She has language now to express when it is difficult and the self awareness tocknow what situations might be difficult. Her confidence has grown so much from being scared of everything to feeling equipped to manage.

I know she is just one girl and everyone with autism is different but I cant3 see how not knowing would be a good thing at all . Trulym why hide from it unless you somehow think it is somethig shameful!?

Fluffypastelslippers · 23/09/2021 09:02

I do feel with children its a disservice not to get an assessment.

I feel more strongly. It's a medical assessment and parents shouldn't be allowed to decide. If a child is showing signs of any illness/condition/disorder (excuse the terminology) then they absolutely deserve to be assessed. A disservice is putting it mildly.

If a child is autistic they are autistic whether diagnosed or not. There is absolutely no benefit for the child I'm not being diagnosed.

As someone who was diagnosed in adulthood I know that a diagnosis many years ago would have changed my life, my mindset and made things easier.