High functioning asd and no interest in a diagnosis.

[coodawoodashooda]

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

@FatCatThinCat

That’s absolutely crackers in this day and age that other countries could prevent security clearances based on someone having ASD. I can only assume it’s not a western country.

Germany and France amongst others apparently.

I find that hard to believe in 2021….

@Thisismynewname123

Children are labelled no matter what. My dd used to be a weirdo/difficult/naughty/stupid/over emotional, etc. Now she is autistic. She is very clear on which "label" she prefers. She is 12.

Autism is definitely a better label than the other stuff. but how much the label changes other people’s behaviour depends on the traits displayed.

DP is autistic himself but doesn’t want to play with other autistic people who are overly emotional when playing video games. Or who insist on getting their own way and refuse to change along with group strategy.

The label is good for managing expectations (e.g when people say the wrong thing they don’t mean anything by it) but it won’t make people accept behaviour that requires a lot of management.

Really interesting thread. I have a SEN which was diagnosed as a child but not explained to me. I got provisions in school but what really helped was learning coping strategies from literature about my SEN as an adult. If I’d not been diagnosed as a child I’d never have learnt the coping strategies and would have assumed I was some type of stupid. So my childhood diagnosis was helpful once I was an adult and could have been helpful earlier had someone given me some practical advice on how to live with my SEN rather than trying to ‘fix’ it.

That said, I’m fairly certain I have another SEN which I’m not sure I want diagnosed as it would be on my medical record and might impact work if I have to disclose it. That said I would also get extra support, which I do need, so I’m thinking about it.

Also if point isn’t clear - diagnosis is a means towards learning about adjustments etc to help adjust.
A diagnosis with just the label and nothing else isn’t worth much.

@Fluffypastelslippers

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.

“ 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. ”

I appreciate your particular experience though I would disagree with the second part of this. I have always found that the people who accept my child, accept him as he presents. The people who don’t accept him as he presents generally don’t accept neurodiversity as a concept at all. They just refuse to recognise the label at all and demand boot camp or some such.

Our decision not to pursue a formal diagnosis came after we’d discussed it with medical professionals.

If we want to help neurodiverse people achieve equality, then we must accept people as they present. We must know that some people stim. Some people don’t like noise. Some people struggle with social interaction.

We all have our differences and it’s quite distasteful to demand mandatory assessment of people who see life differently when there is little to be gained from it.

No-one should need a piece of paper to make their existence acceptable, and it simply cannot deliver that anyway, so if there is no available evidence based medical treatment, it isn’t really worth having a medical diagnosis.

There is quite a lot to be gained in not diagnosing children and accepting them as they are…not least their own self-acceptance and the empowerment to be gained by saying “I will not be uselessly labelled as deficient.”

@MrsKrystalStubbs

Wow what have I just read? My DS is diagnosed with autism, (privately but by a recognised provider), he does not get any additional help from the state because we haven’t asked for anything, we pay for his schooling, OT, therapy and psychiatry privately because we can afford to. He is aware of his diagnosis and he is so much happier now he understands why he is different. Some people may say he is “High functioning” because he can speak, does well academically etc but I know that he struggles with basic concepts about life like wearing clothes, eating, and has no concept about how relationships work. He is great at masking and adept at manipulation especially of adults in authority. DH and I were in denial about his difficulties until he was about 7 and then we realised that we needed to take action. People have to do what they think is best but I am the first to admit they our initial approach to our son’s issues was very wrong.

Sounds familiar 😊.

High functioning is such a big misnomer. One of our DC is diagnosed, others waiting for assessment's, he has the most typical presentation. They're all 'high functioning' and intelligent. But a large amount of scaffolding goes on at home and in therapy to help them continue to function and mask in the outside world.

Our eldest we're seeking a diagnosis to help her, she feels like she's different and doesn't fit in the world. She's always had lots of friends, but she doesn't really understand social and emotional cues, very rigid, obsessive. Masks completely in public. It's quite common for Autistic children who can mirror socially and mask well to be able to cope for many years, but at some stage, often around puberty for girls, life/socialising gets too complex and things fall apart. Whereas if the diagnosis was known earlier strategies to support could be in place already. I don't want to wait till my children are in crises to seek a diagnosis. The path tends to be very long, especially publically.

The Autistic groups I'm involved in all accept self ID for adults, but many of these adults are seeking diagnosis anyway. Those that have gotten a diagnosis , there's always a lot of relief about being able to finally understand themselves.

Side note. I'm always surprised to see Asperger's used on here. It's very much not a term the Autistic community uses and many find it triggering given Asperger's treatment of disabled children.

@MakingM

I think you are way off the mark and hope when your child is old enough to understand they persue their own diagnosis.

I so very much appreciate this post.

@coodawoodashooda

I so very much appreciate this post.

MakingM

I don't know why the app isn't lifting the quote.

[quote Fluffypastelslippers]@MakingM

I think you are way off the mark and hope when your child is old enough to understand they persue their own diagnosis.[/quote]
..and, of course, we would completely support that. If, at any point, our child wants to seek a diagnosis or the situation changes e.g they need exam allowances or similar then we’d look at it again.

At the moment, there is nothing to be gained for him and I, personally, look on with distaste at those seeking to help ASD children perform normal.

ASD is part of who the children are and should simply be accepted as such. The reason they are not simply accepted is down to prejudice not a lack of diagnosis. I’m fairly sure no-one on here would recommend that a black child should receive a little skin-lightening treatment in order to be acceptable in a majority white community and there’s very little difference between that and trying to teach a neurodiverse child to “fit in” or demanding they have a diagnosis to prove their difference is allowable. Both colour and neurodiversitu are inherent parts of the child that attract prejudice.

I hope for more enlightened times too, though I suspect we’re more likely to revisit what was a fairly horrific past for ASD children rather than move forward.

[quote Fluffypastelslippers]@MakingM

I think you are way off the mark and hope when your child is old enough to understand they persue their own diagnosis.[/quote]
But then the decision belongs to them, rather than it having been done to them. Is that not significantly more empowering?

A brilliant post.

But then the decision belongs to them, rather than it having been done to them. Is that not significantly more empowering?

No. It's not about empowerment

I thought that was exactly what its about. Empowering individuals to make best sense of how they individually experience their world?

@coodawoodashooda

I thought that was exactly what its about. Empowering individuals to make best sense of how they individually experience their world?

Not having a child assessed so they can be diagnosed and feel empowered is just plain nuts.

I have a lifelong DISABILITY. My diagnosis did not fucking empower me.

So they can be diagnosed in adulthood that should say

But what if you couldn't pursue your chosen career because of your diagnosis?

@coodawoodashooda

But what if you couldn't pursue your chosen career because of your diagnosis?

Then you would take the company to a tribunal. They are not allowed to discriminate based on disability.

I'm going to leave this thread now. I have given the worst of my experiences and the level of misunderstanding here is sickening.

Empowering

That the most ableist comment I have read on here in quite some time .

In future if you want people to open up and help you by giving their own experience please don't be so dismissive of those experiences.

It's also very prosaically nuts and bolts. Every bit of allowance or help my son gets at school has been easier to achieve (or often, only possible) because we had that piece of paper. There's not a lot TBH, and it can be as simple as my son not getting a bollocking in front of the whole class if he's late. Idealist thinking that the whole world can change to accept difference is no use at all to a secondary school child who's getting detentions, being set up to fail trying to do group work when he doesn't have the social skills, and getting bullied. Teenagers cope, because they know nothing else, until the day they don't.

I have simply met too many parents whose children have survived primary and ended up school "refusing" in secondary. With a diagnosis I think this is less likely, because pressure can be eased a bit in school if they know. If the worst does happen, with no diagnosis you have a long fight on your hands in time your child can't afford to waste.

I absolutely did not get my child diagnosed so I could try and ‘fix’ or ‘change’ them. One of the main motivations for me was that I needed to justify why I ‘let’ them behave the way they do. I am lucky to be able to access the help my child needs without ‘the system’ (LEA, NHS etc) which I think can be very detrimental to children especially those with PDA like my child. I have refused to let my child be forced to ‘fail’ in the education system before they can access any suitable provision, and as I said previously, I am in a privileged position. I can understand why people may not want a diagnosis as I once felt that way too but for them, understanding why they behave the way they do, has been hugely beneficial for my child’s own mental health. They no longer say they want to kill themselves every other day. They do still struggle and there is no miracle solution. It is a difficult place to be as a parent.

DD2 is currently in the final stages of the ASD diagnosis process - coping relatively well (now we've moved her from an awful school situation) at present - but we're in a position at present to go down the private diagnostic route and having that in place so she understands herself and people understand better how to support her in the future - so we're doing that.

I'm also waiting for an assessment via my university (I'm doubting at present I'll make it to the top of the list before I graduate though) - I've scored as a high probability on all the screening assessments, and uni are currently happy to support me as if the diagnosis is in place. That's taken a while to come to terms with and begin to process - but fucking hell it's unpicked so much of my childhood not knowing why I was being told off for being "rude" or why I was getting my head kicked in yet again for being "strange" and why I've never really neatly slotted in anywhere socially (god the 80s were not an enlightened era with SEN). I'm at the point now where I need to know for my own mind - it really came to a head when the pandemic hit and my nice daily routine of getting a certain train, getting into uni at a certain time and going and getting my coffee, and getting one specific train home that went the longer route as it was quiet and didn't hurt my skin... and then not being able to deal with people in face masks whose feelings I couldn't read at all, and the constant changes in restrictions and fear of doing one of the unwritten "rules" wrongly, and then utter sensory overload from all the signage, one way systems, yellow and black shouting at my eyes - it all just completely smooshed up into me wondering why the fuck I was so broken and then the penny dropping and the last 40 years of my life making some form of bloody sense!

The only support I've really used it to gain access to is mental health support added into my DSA package (I'm also dyslexic) and I've used it to apply for a uni car parking permit. I used to get the train in, and struggled massively with that anyway, but now with all the covid announcements and signs and stuff it's too loud in my eyes (that makes sense to me - probably no one else)! I have a named contact in uni autism support I can call on if I need to as well - I've only done this once because it was me raising an issue with my department and I was in such a bad place mentally I was terrified I'd socially fuck that up and make the situation worse - so asked her to read it through first and make sure it "read" OK on a social level. Before figuring it all out - I would have probably gone in way too emotionally heated and muddled and caused a minor diplomatic incident.

I was diagnosed with Asperger's this year. I couldn't actually believe the weirdness in my life was autism until I received the diagnosis and there was no way I would have spoken to anyone about my suspicions beforehand or without a diagnosis.

Since diagnosis I've told DH and my boss only. Nobody else needs to know so I don't feel 'labelled' but I'm coming to understand myself much better and to know when to ask for help.

It's been brilliant for work, my boss has helped shift the workload balance so I now have a much higher proportion of work that suits my skills (detailed analysis) and less of the people-meeting stuff. It's working well for me and the whole team so that's a big benefit.

@Fluffypastelslippers

I'm going to leave this thread now. I have given the worst of my experiences and the level of misunderstanding here is sickening.

Empowering

That the most ableist comment I have read on here in quite some time .

In future if you want people to open up and help you by giving their own experience please don't be so dismissive of those experiences.

Im sorry if i have offended anyone.

Offended is the wrong word. You have taken my life experiences and turned them into something they absolutely are not. I'm disgusted more then anything.

I'm stunned at me telling you I was raped because I did not understand myself, my situation or how to keep safe and you responding 'but it's empowering to choose to be diagnosed as an adult' as if it's some sort of hippie commune I joined.

And yes, I said I was leaving. But that's the nature of autism. I need to constantly defend myself because I have been misunderstood my entire life