Denying my neurodiversity

Try not to let it get to you also try not to get too invested in a diagnosis until you see the specialist. Also you don't need to share what you suspect with others who won't be supportive and perhaps be aware that not everyone will be be prepared to validate you, especially if you don't yet have an official diagnosis. I am also ND and have a neurological disorder I'm under a consultant for that family members dismiss as rubbish, I can't control what anyone else thinks. The information I have about myself and my diagnosis is for my benefit.

I don't have to agree with the OP! I don't agree with the psychiatrist. Psychiatrist's aren't gods! Diagnoses are constructs. Lots of cultures don't have these diagnoses. They are, in my opinion, just labels for traits, and labels that are very much over-given!

It's my view. The OP and you are entitled to disagree.

My post was simply saying that if you don't agree with me, it's fine! Just ignore me and move on and don't let my views get to you. I'm not changing my views though! Why should I!

@Agix not everyone is unsuccessful or needs special accommodations by default when being NT though

Reading the posts it sounds like OP's mother is not very supportive in general and it has little to do with her views on autism. General advice on managing difficult relationships (navigating conversations, boundaries, avoiding getting into discussions such as the one that prompted the first post) would be more helpful for OP than an argument for and against ND on this thread.

Ignore this person.

They do not know what and how you feel inside. They do not properly understand the challenges you have faced. They are not your doctor. They also sound like they don't understand autism.

Some people have a very outdated view of what autism is and think in extremes.

Continue down the path towards diagnosis and ignore them.

I know how you feel; the bit in between a formal diagnosis and being self diagnosed (with professional help) I struggled to get a trained NHS psychologist to take me seriously and diagnose me. I went to an Autism charity and got a private diagnosis.

Some people do not know autism; definitely not in women, opposed to young boys. The Oliver McGowan training (I am a lived ambassador co-trainer), is trying to bring some understanding.

There are several possible reasons why parents may be very likely to deny neurodiversity in their adult children.

1. They've just got used to how you are as an individual, and they can't see things which may be obvious to an outsider.
2. They want their kids to be "normal."
3. They think that it would be some kind of criticism of their parenting - they failed by not spotting it themselves and getting you help.
4. They have quite a few neurodiverse people in their extended family, so their definition of "normal" is not, erm, normal. (Very likely, because neurodiversity often runs in families.)
5. They may well be neurodiverse themselves (again, very likely), and they assume that this is how everybody is.

I understand that it's upsetting when your mum says stuff like this. But there are all these possible factors to consider. Plus she probably doesn't know much about autism (most people don't).

As a previous poster pointed out, an autism assessment involves some questions going right back into your childhood, even babyhood and birth. However, it's still possible to have an assessment without a parent's input. (Otherwise nobody would be able to be assessed if their parents had passed away!). In my case, I had childhood memories, and also school reports and a "baby book" with some notes on my early development. You probably already know enough about your childhood, even if you don't have the school reports etc. And you may be able to ask your mother things which aren't necessarily associated in her mind with autism, e.g. what toys you liked to play with. (Or you may remember those things yourself!)

People think they know about autism but they don’t, if you feel it is right and explains things and gives you comfort that is what matters, you need to cut this person from your life

I've noticed often when talking about neurodivergence that often the bigger critics are those who have many traits themselves.

DS is diagnosed. As is a cousin. And I suspect that many of the older male relatives in that side of the family are undiagnosed. While DH accepts DS's diagnosis, there is still a level of minimising and while I don't think DH has enough traits to meet diagnostic thresholds, having grown up with his brothers and uncles that probably would, autistic thinking and traits are DH's socially normal range. He also works in a sector attractive to high functioning autistic males. His experience level of unequivically NT people is rather low to be able to compare and register the full impact that DS's autism has upon him.

To feel traits strongly enough to go to a GP and the GP to take them seriously enough to refer more often than not means that there is a diagnosable condition there and the question is more likely is this the correct condition than is there a condition. People are more likely to minimise than over emphisise.

It’s hard when it’s your mum, but I think the best you can do is put a bit of distance between the two of you. You say you’ve never been a priority to her. Time to recognise that her opinion of you doesn’t matter. She doesn’t appear to be interested in who you are, just in forcing you to fit into the mould she has decided on for you. I wouldn’t bother mentioning it to her again. Good luck pursuing your diagnosis, I hope you get the answers and support you are looking for.

To be honest this other person might also have issues if they’re so offended by someone else’s health, have such little empathy, and engage in offensive outbursts.

Yeah, in my experience, people will still do that even after you have confirmation through assessment.

My response was, “Thanks for your feedback, but I think I’ll stick with what the multi disciplinary panel of experts said, given that retail managers like yourself are not qualified to diagnose.”

Seems to have shut them up.

@hedgerunner I mentioned them because they’re also what OP mentioned in her post - I wasn’t implying that’s all you need to be diagnosed, I was saying that those issues in themselves aren’t enough as they’re fairly common. Obviously OP’s doctor will know more than what she shared here.

I got diagnosed last week. It would have helped me tremendously if I had been diagnosed as a child. My parents nor teachers cared enough though. I was doing great acedemically, so whatever else I struggled with was my own problem as far as they were concerned. I just got told off all the time.

People won't believe in autism diagnosis because they don't want to accept that some people have it harder than them. That's all there is to it. If you fail, they want to believe it's because they're better than you. If you do well, God forbid you managed it with additional challenges they don't have... That really shows them up.

They don't want to have to understand or accommodate, but still want to appear to be the type of person who would be understanding and accommodating to an autistic person - so to get out of it, they simply deny you're autistic and everyone is over diagnosed or misdiagnosed.

Parents don't want to believe you have autism and may get diagnosed as an adult because it highlights their lack of attention, care and support to you when you were a child.

@SanDiegoZoo
feeling different, being shy and being the odd one out wouldn’t meet diagnostic criteria which shows your lack of understanding. To receive a diagnosis the person needs to meet criteria across all areas, including social communication and interaction and at least 2 of the areas within the restrictive and repetitive behaviours (intense interactions, repetitive movements, insistence on sameness, sensory needs etc) and then there needs to be evidence that it’s having a functional impact on daily living and that* *it cannot be explained by another condition- trauma, anxiety, learning difficulty etc.

All my DC are autistic, DC1 was diagnosed aged 3. DC2 wasn't diagnosed until he was 15, because he was so unlike DC1, he just had to be NT(!). DC3 was diagnosed aged 4 and before DC2 was.

I'm glad they have official diagnosis and it has helped them in various ways.

I think I'm likely autistic. I have struggled all my life and just felt at fault. I had a breakdown last year and it was afterwards I got the courage to speak to my GP practice about exploring an assessment. Unfortunately I messed up by not sending a form back and I've been stuck in shame since. My workplace does accept not having a formal diagnosis, and that has proved valuable protection with some issues I've had there.

I think I've lost any point I was trying to make(!). But at 47, I feel a diagnosis would be helpful for me.

I hope the process goes well for the OP

That's a really interesting perspective. I recommend it above but I think you'd enjoy and learn from a book called the Age of Diagnosis, it's written from a place of asking whether patients benefit from diagnoses (not just ND stuff, also things like being told more likely to get X cancer or Y degenerative brain condition) - particularly in conditions where there's no treatment or where treatment might not be desired.

[PS I promise I'm not working for the publisher I just really enjoyed the book!]

But a lot of people feel that a diagnosis doesn't "work for them" even if they fully understand that they have the condition - there's a poster above who said just that? While lots of others want the diagnosis even if it only tells them what they already knew and they don't want eg any treatment (this goes for other conditions too).

Your counsellor is wrong, as many with lived experience of late diagnosis can tell you. Yes, it does really matter. It affects how you cope with the world and enables you to get more supports. Understanding why you find things more difficult than average is helpful. With something like ADHD, the mechanisms aren't as easy to develop, so being pointed to some specific ones aimed towards those with ADHD can make a big difference.

I know enough people who have been through struggles, late diagnosis and then found greater capacity to manage life as a result of diagnosis, to know that yes, it really does matter.

Unfortunately, many mental health professionals are not well versed in neurodiversity and I've seen that go badly too. Sometimes you get lucky and hit the right professional who does know, and that can literally be a life saver.

Is there a reliable, objective test for autism as there is for diabetes? No. Indeed, NHS clinics in the U.K. assessing adults for autism have such varying rates of diagnosis that the only possible explanation is that the diagnostic process lacks clarity and rigour, and is therefore fundamentally subjective.
Is there a clear set of symptoms for autism as there are for diabetes? Again, no. You will find on this very thread the oft repeated remark ‘if you’ve met one person with autism…you’ve met one person with autism’.
Is there a treatment for autism as there is for diabetes? Again, no. Depending on the profundity of autistic impairment many people would reject quite strongly the idea that there even should be a treatment.
In other words, this is a really pointless comparison.
I have been told that there is a good chance that I am autistic (by the SENCO at my child’s school — she thinks my child is also autistic). I do not wish to seek a diagnosis, and I do not think it would have made my life better to have had one in youth. I am deeply unconvinced that ‘autism’ is a single condition, and I think some of the trite similes used to describe it (‘it’s just like a different operating system — iOS versus Android!’) are especially unhelpful in their implication that a person who might at some clinics meet the diagnostic threshold for autism, yet lives a normal and successful life, has more in common cognitively with a profoundly impaired non-verbal and incontinent autistic than with a neurotypical person. The science on neurodiversity is not settled, and the current elevation of neurodiversity to the status of unassailable identity may not actually be very helpful, either to individuals or to research.
This is not to suggest that OP is not autistic and would not benefit from a diagnosis. It sounds as though she has a lot of questions for which she needs answers, and has experienced difficulties in life that might be alleviated by a diagnosis that may help give her access to accommodations at work or other forms of help. But it is not unreasonable for a PP to say that there are those who will feel that regarding everyone as belonging on the same spectrum, with some experiencing particular difficulties with sensory processing or social deficit for instance, is a more useful approach to those who might meet current thresholds for neurodiversity diagnoses, but who nonetheless mostly cope with everyday life. OP may not be at a point at which she feels she can do it yet, but hopefully there is a future in which she can encounter such people and accept their opinions whilst confidently asserting her own reasons for finding a diagnosis (should she get one) useful.

The problem is that a lot of the traits are fairly vague - feeling different, being shy, being the odd one at school aren’t automatically symptoms of anything. I don’t necessarily think it’s a bad thing (knowledge is power) but like with many trends online, there seems to be a massive wave of self diagnosis.

I was discussing this with my counsellor because of my concerns about DD (and to an extent about myself but mostly DD) and how I think a diagnosis (or not, but it would at least be ruled out) would help her understand herself better and the counsellor asked me: “At the end of the day, does it really matter? She’ll still have to cope with the world, diagnosed or not, and develop mechanisms just like you have”.

And I think it’s true. Unless you’re in a particularly difficult position, being the odd one, being a bit quirky, what have you, is just a part of who you are as a person. Not everyone needs to run with it and make it the centre of their existence (like the friend of a PP).

@FrodoBiggins that’s not accurate.

‘The diagnosis works for you, then go with it’
Implying ‘but it’s a load of bollocks’. Filled with patronising, disability denying ignorance. Not once backing up why or quoting a study.

but yes I’m put in my place now, back to the OP. I support you and I’m sorry your mum is a cow

I would really recommend the book, autism only just one chapter. It's generally a really interesting perspective, and (imo) coming from a position of patient welfare not dismissing people's experiences or conditions.

That's not accurate. The post said that they believed the conditions are over-diagnosed, and - separately - also warned OP that she will come across people who don't believe in the 'diagnosis thing'.

Debate about diagnosis aside, I'm sorry your mum wasn't more supportive of you, OP.

@Byebyechickenso we back down to the ignorant and ‘see where they’re coming from’?
I’m not comfortable with someone not ‘geling’ with my child’s medical disability and implying it’s just the ‘in thing’ to do now?
And they’re talking about diagnosis, not just ‘feeling’ like you’re autistic.