To wish I could be proud of having suspected Dyspraxia/ADHD/ ASD ?

[Greensunflower123]

I see so many people , ( including celebrities), proudly state they have ADHD/ASD / are neurodiverse and they sound so pleased/ happy/ proud to be ambassadors for ND.
Proud to be different.

I so wish I could be like this, but I'm not. I strongly suspect I may have ASD, but I am not proud and feel so ashamed I may be different. I worry that if I get an official diagnosis it'll feel like a shadow over my life I can't get away from, and I'll always feel " like a weirdo."

For example, I worry it would be flagged up at midwifery bookings and I would be referred for risk assessment to SS , ( in the same way care leavers are automatically referred at booking in many boroughs).

For context, I have a six month old baby, have never had any SS involvement but was referred to community perinatal mental health services due to a close bereavement in pregnancy and after having made a SAR I seem irrationality upset that there's one line in the notes saying the community perinatal MH nurse felt it possible I may have ASD/ ADHD . I was discharged whilst still pregnant, and this was never communiçated to me verbally or in writing, ( the discharge letter, received whilst I was still pregnant stated I had anxiety and emotional distress regarding the bereavement with no other conditions listed ).

I remember when I was a child , I had trouble fitting in , but it was borderline.

I behaved in a socially acceptable enough way that I had good friends within the groups that were much lower down the soical pecking order at school.

I experienced some bullying , ( as most of the group did ) , but I knew the soical rules enough to "know my place," and knew how not to attract bullying, ( sadly some other members of the group did attract significant bullying) .

I was generally pretty quiet , shy and to an extent awkward at school; although was often described as funny and fun to be around by close friends.

I started university and floundered as I was unable to cope with practical placements or adhere to deadlines so failed the first year , but restarted at a different university just a year later and seemed to learn from that experience as I stuck meticulously to deadlines , never needed an extension, handed all assignments in and left with a good degree .

I seemed to have learnt from the negative reaction I got from others to behaving in a mildly promiscuous manner at the first university, ( nothing extreme, kissing different men in clubs and approx. two one night stands throughout the year) , and learnt not to repeat this behaviour in the new university cos of the negative reaction it invoked in others.

However , after graduation, whilst i'd always worked in professional roles ; poor organisation was the ongoing "improvement," point that was generally mentioned in work reviews throughout different workplaces in different roles, ( however I was generally praised for most other aspects of my work).

I feel as I've got older , I've found it easier to make friends / get on with people/ fit in, and have found it easier to fit in at mum and baby groups, than say, at school, when I was younger. I still do sometimes feel mild anxiety about whether I'm doing / saying the same thing.

But I have this sense of shame attached to the fact that a few aquantances over the years have suggested I might have ASD/ ADHD and I have then found this line in the perinatal notes, ( it is just one line that states "Y thinks X may possibly be on the ASD spectrum/ could have undiagnosed ADHD," no reasons were given).

I have done many online ASD/ADHD online quizzes and have answered honestly- they all say I don't have it, ( I know not the same as a diagnostic assessment but realistically if I even put myself forward for one there would be a two year NHS wait).

I don't have any sensory issues.
I have no issues whatsoever with change of routine / appointment times.
I don't need to order my stuff , ( quite the opposite, I am relatively messy).
I can generally tell instantly when someone is lying.
I can "read between the lines," "take a hint," and have no issues with inference.
I have no issues with decoding facial expressions/ tone of voice.
I can detect sarcasm easily .
I'd say I broadly understand soical rules .
I am not hyper...
I do not have issues with personal hygiene.

But on the other hand....

Poor organisation has held me back significantly at uni / work ....
I seem to have terrible issues with being late...
I'm terrible at forgetting things e.g keys / passwords etc....
Lose things frequently...
I will Google and research in greater depth things that interest me...
I obviously struggled fitting in with the "mainstream/ popular," group at school, and to a lesser extent university; although I seem to have improved my ability to 'fit in" soical situations as I've got older.
I do have some very mild social anxiety.
I have been pretty clumsy
I have been unable to successfully learn to drive.

Could I have dyspraxia/ ASD/ ADHD , and why can't I be proud of it like the rest of the ND community?

@FetlocksBlowing

Do you enjoy reading? DD was a very early reader but does not tolerate reading unless the stories are short and entertaining like Wimpy Kid and Captain Underpants. She did not understand why I like reading so much and was blown away when I said when I read I see it like a film in my head. She says she just sees the individual words. So had the skills at an early age but not the imagination to enjoy it. She has always enjoyed non-fiction and Guinness World record type books though.

@Singleandproud
Actually I'm an obsessive reader, always have been. However coming from a very academic family as I do, it's noticeable that I favour(ed) less intellectually demanding books than my siblings 😂
I would get very obsessed over series of books eg The Chalet School, ballet stories etc and carried that on longer than you'd think, given that I was a fast reader with a high IQ etc.
And I was good at writing like your daughter, but only when I could lean heavily on themes, characters and styles of writing from books that I loved. Later in life I had a go at writing creatively and realised that I absolutely couldn't! I had no imagination at all 😂

Hope you don't mind me saying but worrying about something that realistically probably won't happen is a symptom, like you worrying about being referred to social services for having an ND diagnosis. I always do that (I have dyspraxia) and I can work myself up into a frenzy worrying about some fairly pointless stuff.

There are some people who are proud and positive about being neurodiverse but I think most people are just trying to focus on not falling over in public.

You're not going to get a diagnosis on Mumsnet, you need to speak to your doctor to get the ball rolling - if you think having a diagnosis will help you in anyway.

I don't see why you're pressuring yourself to feel proud of potentially have a condition diagnosis - you can be proud of overcoming it, but proud of having it?

I have a chronic inflammatory condition- I'm not proud of it, I don't define myself by it, I don't think it makes me more interesting.

I think you would find it helpful to do some research about what neurodivergence can look like in adult women. The fact that you had to work out, by trial and error, how to interact in various social settings is a very common experience in autistic women. We don't intuitively know how to 'be' and so we study how other people act in order to make sure that we can fit in.

If you had asked me 3 years ago if I thought I was autistic / ADHD, I would have been astonished! (I would have been polite though because I know that people don't like to feel stupid! 😂) If you asked me today, I would tell you that I have a ADHD diagnosis, and am waiting for my ASD assessment (the forms are ridiculously long!) and also strongly suspect I have dyspraxia. I am medicated for ADHD and it has changed my life!

Am I 'proud' to be ND? Not really, but it helps explain a lot about who I am, and things I find difficult. It has also become my 'special interest' so I can bore on about it for ages, given half a chance! I am 'out' to my DH, my closest friends, some family and my line manager, but I don't announce it to everyone I meet!

I think there is more social discrimination against autistic people (because we are seen as 'weird'!) so I understand your caution around that.

Best of luck to you - it can be quite an emotional rollercoaster getting to know yourself better but I think you'll like what you discover in the end

You really don't sound like you have ASD to me. My sister got diagnosed with ADHD later on in life and she found it freeing as she felt it explained why she's struggled with organisation etc her whole life - she always thought of herself as 'lazy' which we knew she wasn't, but it gave her some comfort to have an explanation.

I am dyspraxic. I was diagnosed as a kid and went to OT for it. Beyond being exceptionally clumsy and always having bruises, I can't say it affects my life in any meaningful way! Society paints such a negative portrait of neurodiversity - try not to worry too much. A diagnosis/ no diagnosis - it wouldn't change who you are! If you feel a 'label' would upset you though then definitely don't go forward for one, just try to put it to the back of your mind and live your life ♥️

I think the social challenges of ASD for some people are less about difficulties in understanding the intent, meaning, social conventions or emotions of others, and more about the anxiety and effort it takes to respond in what we feel is an appropriate and acceptable way. It's not even something I am consciously aware of most of the time.

However, I have a tendency to over explain myself; I take a long time to formulate written responses because I repeatedly review and moderate what I'm writing; I do not find it easy to make jokes around those I do not have a close relationship with; and I really struggle with giving and receiving compliments, as it just doesn't come naturally to me and I fear coming across as insincere.

There are very few people I am able to 'just be' with, despite being very friendly with lots of people.

Yes I've always had anxiety, but never to the extent of needing / requesting medication from the GP .
Again for a long time I wasn't sure I had anxiety, as the friends I have that experience it have panic/ anxiety attacks , talk about how they need anxiety medication to be able to function/ work etc, which isn't me....( I'm lucky enough that I've never experienced anxiety/ panic attacks ).

The other problem is , my anxiety also always relates to "realistic," worries. E.g my mum and gran both had cancer, ( both have now died), and whilst they were in remission I would feel very anxious in the lead up to their check up's/ scans that they would get bad news/ the cancer would return. But I had no random anxiety that I would get cancer for no reason if that makes sense.

I worried a lot about being refused epidural during labour in the last few months of pregnancy, but that was based on friends who had used the same hospital saying the MW's there had been horrible to them about needing epidurals, and when I brought it up at antenatal appointments they made it clear that "well you should really try to manage on just gas and air ," " I have a feeling you're going to do really well and not need an epidural."

I had a previous manager that was a known bully , ( three separate staff members made complaints against her bullying them) , who was generally very critical of mine and other staff members work . I'd feel very , very nervous before scheduled 1-2-1's with her , but not other managers generally.

I made a SAR because I have an ongoing , open complaint against the referring MH midwife, ( the hospital has taken an age to process it).

I was referred to her by my regular midwife following the unexpected family bereavement midway through my pregnancy. As she was a "MH midwife," when I went to see her I opened up about other traumatic incidents in my history.

This caused her to make some incredibly nasty comments about my sexual history and a historic sexual assault , and when I raised this. , she subtly hinted she could make a referral to SS about my mental health if I continued the complaint, ( in the end she never made any report/ referral to SS).

The reason for the SAR to the perinatal mental health team was to see exactly what she'd said about me on referral forms etc and to see if this would aid my complaint.

This is me! I also really enjoy using semi-colons

So basically the worries about SS becoming involved all link back to this midwife kind of hinting words to the affect of "well to be so upset about what I said r.e your sexual history suggests you have no insight into your behaviour / are unwell, and obviously if you are really unwell we have a duty / obligation to refer to SS," ( although she never did report/ refer). The perinatal mental health team notes do actually say I was low risk MH wise / no safeguarding concerns.

@Greensunflower123 I forgot to add a link to my post about ASD in women and girls - have a look and see if it resonates with you

the-art-of-autism.com/females-and-aspergers-a-checklist/

Also , as a possible reason why it all links in to feelings of "shame," is as a child I had a reasonably obvious disability , ( this has now been corrected via surgery). Occasionally, ( between the ages of 11-13) , other kids would come up to me and say , " haha are you disabled?" and so there was always in my formative years an idea that any disability made you weak .

An aquantance who told me , "I must be autistic," then in the same conversation started talking about a news article about an ASD sperm donor, and how , "realistically it should be illegal for people with ASD to be sperm donors due to the higher risk of passing the condition on," which made me feel so ashamed , ( in not so many words I felt he was basically telling me I shouldn't have children), and this has added to my feelings of shame around the subject.

I know that I'm a bit different/off but then so is my mum, and TBH, I'm 44, I have my own coping mechanisms, and can't see how getting a diagnosis would help anything (well, except I am intrigued by the idea of Ritalin, and if that would calm the continuous storm in my head, just not enough to bother. I've tried a couple of other 'smart' drugs and got nothing from them)

My eldest is dyspraxic, and I've obtained a diagnosis for him because it does have so many effects, and I don't want school to give him a hard time over the things he finds genuinely harder than other kids, and nor do I wanting him feeling bad about it (I might have had a bit too much success there.. the child has no qualms about his elasticated trousers and shoelaces, and prefers his nearly unreadable writing to using the computer - which I apologise to his teachers for every parents evening!)

Which is all to say, you're spiralling on this. Recognise that, and let it go. Everyone's good at some things and bad at some things, and accepting that leads to peace.

I just wanted to add , I recognise his comments about ASD sperm / egg donation are extremely offensive and are not shared by me. I was just trying to provide background/ context as to why I seem to be unable celebrate potential ND.

I am ND. I am quite open about it, but I feel I can be because I have spent decades knowing I think differently and being able to use that to my advantage. It helps me in my work. You first need to understand how you think differently and find coping strategies for where you might struggle and how to harness its benefits. The pride comes in time.

I have diagnosed ADHD. I'm not an expert, but your list of traits sound more dyspraxia/ADHD (predominantly inattentive) than ASD.

I'm not hyper or loud (though I do talk a lot and can dominate a bit over quieter people unintentionally, e.g. my mum and me tend to talk over my sister), never in trouble at school, not even once. Was basically a model student, although when I looked back over my school record for diagnosis info purposes, I realised that my grades for my mock GCSEs in year 10 were the same grades (more or less) as I got for my real GCSEs in year 11. You're supposed to advance, by half a grade to 2 full grades in most subjects. It made me wonder why nobody flagged that up at the time. I then went on to college full of enthusiasm for a course in my favourite subject - graphics - and the structure was very different, rather than do Task A by Tuesday, mark it, Task B by Friday, feedback, Task C over the weekend etc it was: Here is a project; you have three weeks to do it. I was totally baffled at my inability to do this and constantly getting called into meetings to explain myself, which I could not. Again, nobody suggested any kind of assessment, I guess it just wasn't on anybody's radar. I didn't manage to complete the course to the required standard because of this, even though my work was good and got good feedback; it tended to be all the surrounding work that I wouldn't produce to the expected standard. I could give you a finished design, but documenting the process by which I had come to that design was not something that came easily to me. I missed out on a university placement. Everything kind of spiralled from there. I realised that the ADHD-PI presentation was a thing (BTW, the term ADD has not been officially used since 1987) when I was 25 and it took me another 2 years to get the courage/organisation to ask for referral, that then took a few months (before the current backlog).

I don't know whether I'm proud of my ADHD but I'm not ashamed of it and it doesn't worry me. Although I did almost have social services involvement as a direct result of difficulties I later traced down to the ADHD, I suppose it hasn't really occurred to me to worry that it would trigger SS involvement on its own, and I have mentioned it since then to a midwife. For me, it was the undiagnosed and misunderstood nature of my own difficulties that led to those difficulties in providing an appropriate environment for DS1. Now that I know what I'm fighting it gives me a much better chance of doing better.

I’m not proud to be autistic, I’m very happy to be able to understand myself better, am happy to be me, and I suppose proud to have successfully seen my children through some very tricky times.

At the end of the day you are going to be who you are for the rest of your life, so you might as well come to terms with it and be happy.

It's pride in a similar sense to gay pride, isn't it? Not being ashamed or thinking it makes you something lesser. A backlash to stigma.

A lot of that stereotype is because it was originally all based on boys and that is how they tend to present, but that is why it is ADHD (attention deficit hyperactive disorder). Boys generally present as hyper active whilst girls are inattentive.
I haven't RTFT (I know I know) but we on the internet cant diagnose you OP, you need to go and get a referral. The issue you have is your perceived idea of "normal". For me a diagnosis helped me understand myself better and why I struggled with things that other people didn't, I always felt different to everyone else anyway so I never had that side of it.

To answer your original question, I'm not particularly proud. I was excited and devastated equally when I was diagnosed and talked about it a lot, but now that the novelty has worn off and I've settled into it, I just give it a mental nod now and again.

I deeply regret bringing it up at work now, as my well meaning manager just doesn't get it and is always asking if I've told the team about it etc. There have been some benefits at work but on the whole it has made me feel "less than", and I really didn't need any more of that!

So now I have researched some more , and really feel like there might be something in the ADHD symptoms. ASD when suggested never seemed to quite "fit," especially as all my issues / problems seemed to kind of be the opposite of what was on online symptoms ,( messy , disorganised, poor time management, lateness, impulsiveness , forgetfulness, lack of planning ) . I've thought about ASD, Dyspraxia, General Anxiety Disorder - but , until reading the possible undiagnosed ASD/ ADHD from the perinatal nurse, I'd never considered ADHD as I associated it with hyperactivity, anti-soical behaviour and general loud / domineering personality types.

I wonder if being assessed would help.

@Greensunflower123

I have a feeling that unless you get assessed you won't be happy, but unless you go private you will be waiting a long time.
I went to a talk recently about adhd which was fascinating. My son has an ASD diagnosis but I recognised a lot of him in ADHD. The speaker, who has ADHD, was speculating that in the future there won't be a distinction between then, they will be seen as one spectrum. I hope you can see it in the photo, details of his podcast which you might find useful to listen into. The Chris Packham programmes on BBC are also good for his take on ASD.

The talk I went to is part of a whole series around the country. You might be able to get to one. There is also one specifically about women and ADHD
It's called Seed Talks. I'll post a link when I get home. (Currently sheltering in my allotment shed !)

There is a lot of overlap between ADHD and ASD. I don't think I would meet the criteria for an ASD diagnosis (and I don't identify with a lot of it anyway) but when I've done ASD quiz things - there is that "Autism Quotient" one - I come out with a totally spiky profile, hitting some factors absolutely spot on and some factors not at all. I assume that is the ADHD effect. I also wonder if it's part of the same spectrum.

I have Combined ADHD, DS22 has Hyperactive ADHD and DD18 has Inattentive ADHD. I wouldn't say it's something to feel proud about, more that you're able to accept it and manage it better with knowledge. Had I known it was hereditary and was diagnosed before having children, I'm not sure I'd have had them tbh. It has been absolutely exhausting and deliberating but that's because I chose to fight the system for my children to have a better life living with it than I did. It has been really tough going with managed moves at Primary School, behaviour diaries, meetings, assessments, Private Schools, home education, facilitating Bronze, Silver & Gold DofE, peer anxiety, depression, Rejection Sensitive Dysphoria, Time Blindness, Disorganisation, Hyperfocusing, lack of focus, forgetfulness, intense emotions, emotional dysregulation, self-harm, suicidal thoughts, bloody mindedness, floods of tears, immense frustration, you name it.

Neither wanted to be medicated, both now use supplements, DS self-medicates and DD microdoses. Which seem to be working well for them. Since being diagnosed, everything in the past made complete sense. DD graduates from his integrated Masters this year and has accepted a job abroad. DD has a conditional offer to start University this September. I'm very proud of them both but not proud of having or them having ADHD.