Denying my neurodiversity

[PinataHeeHaw]

I saw my GP about 18 months ago now as I feel I have always been different. I find life difficult in general, coping with work and I have regular breakdowns where things have got too much. As a child I was painfully shy and what some people might call odd.

My GP ran through a series of tests and said they thought I was autistic. I was then referred to see an autism speciist. Im still waiting to see someone. It finally all made sense. Watching a documentary on autism in women and girls presented by Christine McGuinness changed my life as for once in my life I identified with other women and thought, 'wow, that's me'.

I was recently having a conversation and mentioned my autism and the other person said 'you're not autistic'. The conversation went on for a little bit, I was getting increasingly upset and then said about the doctor thinking it's highly likely I was. The person then said, 'the doctor is a fucking liar.' I am so upset. I've been feeling low recently and this has just added to it. I feel so embarrassed that this person thinks I'm a fake.

I think this is a really good way forward, compassionate yet practical.

Many people think they know a lot more about autism than they actually do, and they are often extremely uninterested in your opinion of whether they are right or wrong.

Is it possible that your mum just doesnt want you to be autistic? It sounds like quite an aggressive response when she's calling your GP a liar.

Some people don't agree with self diagnoses. Maybe your mum is one of those.

How did it come up in conversation?
Some people have been diagnosed for years and it never comes up in conversation. Is it the first time you've discussed it, or the first time your mum has reacted badly?

This is probably the strangest, most dismissive post I’ve ever seen on MN. A medical diagnosis is not a belief. Would you say that to a diabetic?

But you'll meet more people that don't really gel with the whole diagnosis thing, so you need to toughen up and ignore us and don't take our views personally.

Some people are into diagnosis, some aren't. That's fine. You do you and don't let anyone else get to you. Just ignore and move on...

Such ignorant comments. Why should anyone have to "toughen up" because you think your ill-informed opinion is equivalent to a diagnosis by a consultant psychiatrist,
@SmallFried?

Have you looked at right to choose assessments? The waiting lists are shorter generally

First, as far as I could tell OP doesn't have a diagnosis, she has a referral from a GP for further testing.

But also, @smallfried isn't presenting an irrational or minority view. Of course it's one you disagree with but it's not uncommon even among scientists and clinicians in the area. There's a really significant debate around autism diagnoses, and more so re women where the categorisation has been changed to fit the fact that women don't largely, present with the same symptoms seen in boys/men.

There's a very interesting book about it - and other diagnostic matters - by a prominent neurological consultant Dr Suzanne O'Sullivan called 'The Age of Diagnosis' which looks at loads of the science issues around diagnosis as well as the benefit (or lack thereof) of diagnosing certain things. She also takes issue with the suggestion around some ND communities that neurotypical people consistently find life easy, social interactions a breeze etc., given that of course life and all that comes with it are difficult for everyone. She explains it better than me obviously!

Most people who are autistic know before they get their diagnosis. The diagnosis is really for the benefit of other people who need that confirmation.

Ignore the doubters OP, you are better informed on your condition than they are.

I read an interview with her recently.

OP, your mother isn’t a qualified specialist (and as Suzanne O’Sullivan argues, there’s wide disagreement and debate even among experts). You don’t need her to validate your diagnosis, if you are assessed to be autistic,

There’s no medical diagnosis. The OP believes she has autism and she may well be correct. She might be incorrect.

I kind of see where @SmallFried is coming from.
Even once you have a diagnosis, you are still going to get people doubting it, disagreeing with it, and yes, if you mention it, you can't guarantee that everyone will be supportive.
Autism isn't always obvious in the same way as a physical disability and many many people have a really hard time with believing in hidden disabilities. We are wired to have more understanding and empathy of things we can see!

I have a child with autism and I've had people who have known my DC their whole lives tell my DC they're definitely not autistic. I had one person tell me my DC was not autistic despite a diagnosis, yet this person said her child was autistic with no diagnosis. 🤔
That's the way some people are.

You can 'know'. A lot of people have a very limited idea of what autism is and how it presents, especially in women, so these kinds of denials are very common for those who have what would once have been called Aspergers.

I am autistic (would have been Aspergers diagnosis once upon a time). I don't have a diagnosis. People generally can't tell unless they know me really well. I feel no need to get a diagnosis, but I know I'd get one if I did go for one.

It doesn't matter and I don't care, but when I learned about it I related so perfectly.

Yes, and when someone tells me their child is autistic, I automatically assume one parent, quite likely both parents, are as well.

Then we get on like a house on fire.

The post I replied to clearly says they don’t believe in the diagnosis ‘thing’

@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.

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.

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.

@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

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).

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.

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.

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).

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!]

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

@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.

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.