Did your ND get missed until adulthood? Why?

[NCed4Help]

Regular mums netter but NC as I am in the process of exploring various diagnoses. I also have another thread on here.

I have done various screeners - ADHd/ASC/Dyslcalculia/Dyslexia etc. (not sure if there are any more screening tests I should take) to try and get to the bottom of what I am experiencing.

I am scoring highly for ASC/Dyscalculia, moderate for ADHD and Dyslexia. But, my question is, how do these things 'progress' with age and get missed?

I would have been considered a model pupil in school, did well academically but very quiet/private and to myself. How did I not struggle more? Why am I struggling so much now?!

I would put it down to lack of awareness. I was born in the early 70s - there was just no awareness of neurodivergence amongst the Joe-average public. I don't think I heard of autism until pretty much the 1990s, and then only a very stereotypical version of it.

I'm fairly sure nowadays I would have been referred for assessment as a child. It was a very different world 40-50 years ago!

I was at primary school in the early 80s and I think it suited an autistic child. Very structured timetable. 30 pupils, one teacher, teacher taught at front of class. No group work. Lower social/emotional educational requirements.
I was quiet and got good marks so teachers thought I was fine. At lunchtime I would sit in the library in the quiet and read books.

I have ADHD (undiagnosed as can't be arsed/lack the executive function to follow through/weary of impact of diagnosis) and probably on the spectrum with various sensory issues and mild OCD... Bumble along now with various concessions and coping mechanisms - plus the usual associated regular daily fuck ups and messy house! - but I was a Lot worse as a child and teen however was labelled lazy/naughty/disruptive/off the rails and left to it 🤷🏼‍♀️
My mental health was in tatters - I lost friends, self harmed in a variety of ways and dropped out of school but my parents, who I suspect were also ND, did nothing to help or else couldn't (a mix of both i suspect)..

I was casually diagnosed by a Dr in my 30s when I was at an appointment for something else (an eating disorder) however at the time he advised me to just continue doing whatever I found helped (bit outing to anyone who knows me but at the time one of my coping mechanisms was smoking pot!!) and that was that. When I had kids I obviously had to ditch my coping mechanisms - busy manual Jobs I found suited my working style, eating disorders, smoking pot and regular exercise - and that's when it started to seriously fall apart and I was forced to look at myself a bit more and acknowledge the problem...

Still haven't got diagnosed though 😂

My nd got missed because I mask well and my parents were of the mindset that a label would hinder not help and also general lack of awareness.

Absolutely bang on of PPs too - I'm sure I was in school with several people who would've been diagnosed with autism now! ADHD too I expect 🤔 I certainly wasn't the only "disruptive disorganised" one!

Thank you all!

It's interesting for me to understand this because when you read on the NHS list it's such a prescriptive list of things and I don't fit the criteria, however wider reading around the issues and screening tests say I do. But I'm not sure how it's been missed as I was a late 90s and 00's child so really there was awareness.

Was it because I was a quiet female child? Popular on the face of it but often forced myself to do things that I knew were a struggle because I knew that it would look a certain way if I didn't. Is that masking?!

I'm shocking myself these days by just how poor my understanding of myself has been up till now (29)

Same! I think they knew but because of the difficulties of trying to get them listened to about my brother and another diagnosis for me, they just left it.

My symptoms haven’t progressed with age. I’m the same now as I was then. The difference is I can refer myself for diagnosis now, whereas before I had to wait for someone to notice (and they never did).

I also think symptoms were minimised in the past. Nowadays a girl with no friends might be flagged as having autism. But back then people would just say “you have no friends because you’re a swot”, “you’re too shy and quiet”, “you need to try harder to fit in”, “nobody likes you because you come across as snobby and arrogant”, “you need to smile more then people will want to be your friends”. Etc.

Mine was pretty much battered around for years as phobia/OCD/anxiety. I can see why, as this was the predominant symptom of the ADHD. In the 80's/90's ADHD wasn't such a thing I guess, and was merely attributed to hyperactive little boys.

Yes, and I don’t know how because I’m incredibly obvious with my adhd. You can tell by talking to me imo. I could never sit still at school, was always daydreaming, I lost all my worksheets and forgot my pencils, pens, PE kit, would blurt out the answers or random things in class, would just randomly wander off, got into fights with other kids, explosive reactions etc. Literally classic adhd - I’ve no doubt if I’d been male I’d have been diagnosed. I ended up with anxiety and depression as a teen.

Oh and I was always breaking bones and spraining things, dropping glasses, walking into doors, my clumsiness was a family joke - wasn’t diagnosed with adhd and dyspraxia until I was 23, when DS1 started showing signs of it.

I have adhd and asd , it was missed simply because i was a girl. Back in the 90s they knew very little about the fact that girls present differently to males. I was just labelled naughty , lazy , distracted.

I was an intelligent, quiet, well behaved girl and both primary and secondary schools were good in the sense that the teaching was excellent and I tested well so always had good to excellent test and exam results. And it was the 90s, so girls having ADHD wasn't a thing.

I don't like the current trend of headlines appearing about "the rise in 30 something women being diagnosed with adhd" but the question is asked in such a way that it is our fault for being diagnosed, not the system at fault for not picking it up in our childhood.

As to why you are struggling now? Beginning uni, beginning work and motherhood are all triggers for someone with adhd no longer coping as their previous structures and supports have fallen away, or in the case of motherhood, they are the ones expected to do the organising. It is literally harder to "adult" as you genuinely lack the executive functioning required.

I am a late 70s baby, it wasn't a thing when I was a kid. I was a high flyer academically, but a mess emotionally but couldn't express it, anorexic, school was awful. I had no friends, and didn't really want any.

It's only since having my own diagnosed ASD children that I went through the process for me.

Things like having to go and sit in the kitchen with colleagues for lunch, or seeing someone I know on the train who will want small chat are still awful situations, I will make any excuse to get out of them.

I was born in the 1950s, and it wasn’t even considered in those days. And when most of one’s relatives (and indeed inlaws) are also autistic, it’s the default “normal” for the family.
I wasn’t diagnosed until I was in my late 40s, as that’s when DD was picked up. And yes, females are much better at masking in public and internalising all the stress, to the detriment of our mental health, whereas males are more likely to have meltdowns.

I think having (possibly) ND dps can be a factor because things that an NT would pick up on as strange can seem quite normal.

Dh and I have looked at ds for years scratching our heads trying to see the autism but only seeing our own traits in him. But at least he was diagnosed.

I was “the intelligent one” in my wider family but it was always said in the context of having poorer social skills and being shy. I would get this response whenever I tried to join in or dropped my guard and said what was on my mind. But it was confusing because it sounded like a compliment and felt like a put down.

The other phrase I heard a lot was that I was creative - this was an explanation for everything I couldn’t do, even now my dm will say (with great kindness) “but you’re so creative” if I try to talk about my difficulties.

It’s very hard to get from the concept of being some kind of creative genius (and I’m really not) to needing a diagnosis!

I also have deep issues in regard to tidiness and stuff management as it was something that made my dps properly angry. Neither of them are normal either in their stuff management so they weren’t able to guide me or establish routines. I was a horribly messy child.

In school I was a model student, but I chewed my hair, pulled out my eyebrows, chewed the insides of my cheeks and pretended to morse code and touch type with my toes. I just didn’t have the confidence to act out. My homework took ages but no one ever helped with that. I didn’t dare not do it, so I turned a lot of worry and fear inward. I didn’t act out but I’ve been pretty horrible to myself for years.

Yeah. My mum is autistic and dyslexic, my dad adhd dyspraxic and autistic. When I was dx my dad didn’t believe I becsuse “well she’s just the same as I am and there’s nothing wrong with me”. Now he’s realised later on he’s neurodivergent too. But it meant growing up, my parents who are by societal standards quite eccentric, never saw me as odd or different because it’s normal to them.

My husband is ND as are all our dc in various combinations, so in our family it’s so normal but we almost certainly seem weird to outsiders.Q

@Trivester and @Notlostjustexploring what you've both said resonates a lot.

I think I directed a lot internally, I forced myself to study and study and study so I could do well academically. DH has often commented how I passed Maths (not nastily, genuinely bemused as he failed but understands Maths far more) as I can't do times tables/can't tell the time and just don't get general math concepts.

I think motherhood has been a trigger because the 'down time' I used to get is now taken up by a (very lovable and wonderful) time and energy thief who is my 22m old DD.

I often felt that I should have been more popular but couldn't gel with people (not unpopular just have a smaller number of individual friends). They talk and aren't clear on what they want, I also cannot be arsed to expend energy on people I won't have long lasting relationships with. I'm not an acquaintances person.

I'm constantly ripping my skin on toes/fingers/scratching/rubbing labels and so sensitive to touch and materials.

Thank you all for sharing your understanding for me, so I can better understand

@ForestFae Yes, I wouldn't be surprised if my Dad has autism/Asperger's he seems to fit the criteria very neatly but as a young black man it wouldn't have been looked at and perhaps noted instead as being 'intimidating/wary/aggressive etc)

Also, for my mum I'd not be surprised to learn she was dyslexic and had ADHD, but again, young Asian woman wouldn't have been looked at in those days she'd just be noted as 'thick' which is what she says was said to her often

However they've both experienced trauma also so perhaps would be looked at in light of that instead

Early 70s baby with recently diagnosed ASD. Started off very well, enjoyed primary school etc. lately I read my school telos right through from nursery to A level and it's hart breaking to see the decline. I always thought I did ok at school, I'd forgotten all the walking out of school, absences, missed homework, refusal to participate in lessons etc. And my 14yo is following exactly the same pattern. That's even more heartbreaking.

I have ADHD. Well… I’m having the assessment next week.

Pressed post too soon. If it comes back as not ADHD it will be a huge surprise to a large number of people in my life.

It was not diagnosed in childhood because back in the late 20th Century it really wasn’t something on anyone’s radar. Certainly not in an irritatingly chatty girl who never dies her homework.

What didn’t help either is that I’m very clever (sorry to sound boastful, but that is what’s scraped me through life in such a way that from a distance I look like I’ve achieved loads). I’m clever and good at pattern recognition - which meant I could figure out the formula for ‘success’ in particular exams or other assessments and apply it. That got me through school with really excellent exam results (but no study of organisational skills to take with me into later life) and also university with excellent results (although not without fucking up, changing university, restarting, resitting and then eventually, when other circumstances made it an absolute necessity, actually getting it done).

Repeat that pattern over and over again and you gave my life. Stand far away and it looks impressive. Close up or inside it, it’s a mess - always teetering on the brink of disaster and, actually, a life where people can and could see so much ‘potential’ in me that just doesn’t go anywhere.

This, and also for me it's quite clear that one or both of my parents are autistic so my behaviors seemed normal to them. I also have a profoundly autistic brother so I imagine they were far too busy dealing with him to see what my issues were.
They just thought I was extremely gifted as I was hyperlexic and taught myself to read at 2.

I think most of my differences were put down to "giftedness" (you'd never know it now..!). Nothing else was looked for. Sensory sensitivities were present but not extreme. Stims were hidden as much as possible, because I knew from reactions to older sibling's stims that they weren't "ok".

ADHD wouldn't have been obvious in primary school because I was generally ahead of the class anyway, and inattention was assumed to be boredom/understimulation. High school absolutely dropped the ball (it was clear as day looking back through school reports), but my struggles were written off as being mental health difficulties, and because I performed well in exams (adrenaline = hyperfocus!) they eventually just gave up on getting me to do homework etc, and let me carry on as I was. ADHD wasn't on people's radars for high achieving girls 20 years ago.

I was also, without realising it, really good at masking. See above re: stimming - I remember from the age of about 3 or 4 that I knew I had to cover up lots of things, and be a certain version of myself my parents encouraged me to think of myself as being. Plus the combo of ADHD and autism tend to cancel each other out to some extent, at least from the outside - e.g. the autistic need for routine and security and predictability can be hidden by the ADHD need for novelty and stimulation and excitement. I never seemed too fussy as a kid (just headstrong and liking to be in control) because trying new things did interest me.

So yeah. All struggles were written off as frustrated intelligence, and already being "different" than most kids, coupled with being a moody, depressive teenager who CBA to do her homework.

Hoping for better for future generations.

Thank you all for sharing

I've been having a wobble this week as I have an appt coming up with GP to discuss this and just think to myself, why?
It seems self indulgent of me to pursue this when outwards looking in there aren't any 'major' issues.
Part of me wants to know for me, and for DD. But part of me thinks I must be dramatic and reading too much into things

I was diagnosed with autism a few months before I turned 41.

Looking back it was really obvious but when
I was a child it was rare for girls to be diagnosed. I was painfully quiet at school but a straight A student with no friends. I must have hid my anxiety very well.

It only became a serious problem for me when I started work and couldn't cope. Being ND for me has been far far harder as an adult than it ever was as a child. My resources for dealing with stress have been worn down over the years and I think I'm less resilient now.