Autistic mothers of autistic children?

[elfsocksandsnowboots]

Has anyone else started wondering if they are autistic following their child's diagnosis?

My daughter has recently been diagnosed age 3. She's my eldest child. I'm 35.

I've been mulling over the diagnosis report which sets out the difficulties she has in detail, and discussing it with DH. At so many things he's said 'she must find that so tough' etc and I've responded with 'she does'. Because I can relate, exactly. Because I do too. Reading the bullet points I just keep thinking 'me too' for almost everything.

I have always 'got' DD whereas DH has found her behaviour, even as a baby, worrisome and stressful. I found her stressful too but I was always able to meet her need, whatever it was, even when it pissed people
off/inconvenienced them because I understood her. She's always been difficult and different. Not stereotypically 'autistic' in many many ways but not typical either.

We have no history of autism in either family, as far as I know.

I have been labelled 'difficult' myself many times over the years although it's never my intention and I never get why people think that. I am direct, although I like to think I've (grown up!) learned the value of tact and empathy over the years. I'm very routine driven, I hate plans changing and as the years have gone on and I've settled down and had a family I've grown more and more introverted and find socialising pretty tiresome and exhausting unless it's with my small groups of very old close friends. I hate people (my children and DH excepted) in my space. I've always had difficulties with food textures, and still even as a grown woman miss certain food groups because I cannot bear them in my mouth. Conflicting noise annoys me so much I could rip my own ears off.

Lots of this is just standard stuff I think, as we get older we and our preferences change. But the similarities between me and my now diagnosed DD just keep ringing in my ears.

I'm a perfectly functional adult, wife and mother of two who has worked in decent career at a senior position prior to leaving to raise my family. A diagnosis now wouldn't benefit me in any tangible way. It had just never even crossed my mind before and I wondered if anyone out there has found the same?

Totally! The presentation of ASD in girls is different to that of boys. I’m convinced I’m the girl version of my ds who was recently diagnosed.

Also totally functional adult with a career, children, marriage etc. Just shocking mental health history .

My mental health has (I think) always been ok. I was told when DD was 18m that I had postnatal anxiety. I had therapy.

In hindsight I don't think I did have PNA. I was anxious at times and stressed out, certainly. But I was getting over a traumatic birth in which we both could have died and were both left injured, plus a baby who cried constantly. Partly through horrendous silent reflux and partly because she was just a huge crier. She has always, always hated groups of people. She was, as a baby, happy if she was at home, with me (or DH). Too much stimulation and she'd be off on one.

With the benefit of hindsight, I was anxious whenever I tried to go out because DD was so so distressed whenever I took her anywhere. I couldn't even meet a friend for coffee without her screaming the place down. Still can't, tbf, (although she doesn't scream now, she just talks and questions endlessly and won't let me get a word in sideways) but at least I know why, and just arrange any 'coffee with friends' time for when she's at preschool.

Other than the anxiety, Ive never had any mental health issues.

Well I have a diagnosis of dyspraxia plus hyperlexia, which came home to roost aged 37. The person who carried out the screening did gently advise that this is probably not the full story and that this combination would probably point more to Aspergers but I haven't pursued.

In the school years before this I had a very good academic record and seemingly great potential, but the longest I have been able to stay in a (pretty generalist) job is 3 years at a time before literally wishing to run away and ideally start over somewhere else entirely. I got screened because I heard a presentation about dyspraxia and was quite stunned at how many things sounded familiar, but before that I had never heard of it.

When I researched blogs about parents' observations about their young children, it was this that rang in my ears, as you say, night and day, with the hindsight of what I had been like. More and more things that I had assumed were just me being weird or quirky. Food texture and methods of eating certain flavours too, e.g.if they are cooked or not. The way of walking downstairs in the early days after learning to walk (difficult, one foot then 2 on the same step, possibly with eyes shut even). Recognition of patterns meaning that musical notes and the letters d, b, q are potentially interchangeable (and many similar tangents). Some patterns with colours being really disturbing and nauseating. The feeling of it being a huge length of time before the penny dropping about how to read an analogue, round clock or watch in infant school (I can still make this totally mess with my head now if I try to think outside the accepted drill). Very left-field methods of navigation that don't seem to match what other people would normally do. There's a lot more but I won't go on. The hindsight was just amazing and horrific.

I have a cousin who is definitely autistic, the high/not so high functioning aspects fluctuate with him (he works, is an HGV driver), and am now sure that both his Mum and my Dad are (they are siblings). With my Dad, though, his career has been in mathematics and theoretical stuff. Is a lovely person, pretty introverted, but I can see he has played to his strengths and still had faith in his strengths too, so he has seemingly made it work for him. I firmly believe that for a lot of people, strengths are part of it as well as disadvantages and it is sad when people want to underestimate you in terms of capability.

My DD1 and DS2 are both on the autistic spectrum... DD1 is very functional (she's a doctor) but has struggled with her mental health , also has ADHD and was a very difficult child. DS2 is less 'functional'..has learning disabilities, special schooled etc (but has still achieved SO much more than we ever thought)

I have never been diagnosed but have absolutely no doubt that I am on the spectrum... tbh I'm not sure how I ended up with a husband and children (!), as I am very much a solitary soul, hate change, don't like being touched, am extremely anxious in social situations.. and basically prefer to be alone.

However I have learned to adapt and cope, and on the plus side it has meant I have been able to understand my children, and also make a career of working with children who have autism.

My own Grandfather was definitely on the spectrum also...a very able but very odd man, so I suspect there is something genetic to our ASD.

Can’t reply right now (sick child ) but just placemarking to say absolutely yes. I’d find myself questioning my DD’s quirks and then thinking “ah but that’s normal, I was the same.” And then the penny dropped when I queried whether I was all that “normal”. I still don’t know whether she is on the spectrum but my gut says she is.

Then her younger brother came along who is definitely autistic and is on the pathway to a diagnosis.

I’ll come back tomorrow.

I often wonder. With two children with ASD I have started asking questions. I didn't fit in anywhere as a child and was often called weird (before anyone says anything I know thats not necessarily a sign. Just food for thought). Even as a young adult I struggled. I only got comfortable with being social in my 40s and even now I struggle if my routine is upset. I do wonder what if anything would be gained by exploring it further though

I was diagnosed at 45 when ds, seven at the time, was diagnosed.

No diagnosis but, yes, I'm convinced I'm on the spectrum.

I was kicked out if pre-school. My Dad jokes that it was a total shock when I was born compared to my elder sibling and if I'd been the first child, they'd never have had another as I was such hard work as a baby. My Mum would refer to me as a "little madam".
They didn't bother putting me in nursery after the pre school experience. I booted the reception teacher in the leg on my first day. My mum had to bribe me with chocolate to get me in to school and they had to bring my elder sibling in to the classroom to help me cope.

After that, I was an angel pupil, petrified of getting told off (just like my child). Wanting to be perfect at everything.

Sensory difficulties around clothes. Hate loud noises - never understood why my friends liked going to nightclubs/pubs with bands.

Still find it hard to make friends. Didn't have any friends until year 6 at school. The other kids would just refuse to play with me. I was different. Difficulties with friendships in years 7-9.

Lacking understanding of social rules at school.

OCD in childhood/teen years.

At work, didn't cope very well with unexpected change. Very thorough and a perfectionist.

A flash temper. I am really calm and placid most of the time but when I blow, I properly blow!

One autistic DD and DS awaiting assessment.

Get social hangovers too. I can only cope with being around other people for so long. I didn't really enjoy house sharing. Perfectly happy living alone.

Took months to settle when I moved secondary schools at the beginning of year 10.

Dad called me "dream boat". He'd send me upstairs to fetch something but, by the time I was half way up the stairs, I'd forgotten what I'd gone up there for!

Ds is 15 and was diagnosed with autism in September, quite late for a boy. We attend a parents support group and many of the parents there feel they may be on the spectrum.

I have always had sensory issues around noise. I can still remember now having full blown meltdowns as a little girl because I couldn't cope with noisy environments. Still don't like noise now but would put my fingers in my ears and manage. I did also have an eating disorder and other mental health difficulties growing up. I'm quiet (but do have friends) and anxiety has always been part of who I am.

I'm not sure though that I would fulfil all the criteria for an autism diagnosis. It's not something I feel l need to pursue, well at the moment anyway. To be honest getting Ds's and fighting for support for him has been exhausting enough!

It's funny you say what you were like as a child @Punxsutawney. My parents always say DD is just like me. I never struggled with groups of children like DD does but all of my family describe me as a naughty and hot tempered child. I used to have full on tantrums, frequently, and DM says nothing she did in terms of discipline helped. It was always put down to me misbehaving because my parents divorced when I was 4. Also I guess it's not unusual for 4/5 year olds to tantrum. I was an awful fussy eater too. I lived off of toast, cereal, cheese and meat for years (I am much better as an adult!).

DS has recently got an ASD and dyspraxia diagnosis. I don't think I have ASD, but I had wondered for a long time about the gross motor and organisational skills of dyspraxia. It was years before my PE teachers twigged that I genuinely was that inept. I'm appalling at throwing and catching, learned to swim at 16 after years of failing to learn in school lessons, learned to ride a bike at 19. At secondary school, I coped with organisation by lugging everything every day. My organisation skills were a problem in my PGCE until I found a system that worked for me. A standard diary teacher's planner does not connect with me, and I struggle with lists. I need information colour coded and spatially arranged. When I brainstormed my concerns and observations for DS's referral, it was a mind map on coloured paper with arrows everywhere. I was thanked for the level of detail and it went a long way to securing his diagnosis, a pleasant surprise as he is a high functioning masker.

DS and I are different, but I "get" him. I had auditory processing difficulties identified in early adulthood. I can understand that the mixer desk of his brain has settings that are out of synch and it's draining. I struggle with large group dynamics and background noise. I've always been quite self sufficient socially, and my lasting deep soul friends are low maintainence. Many of my friends have something atypical about them, dyslexia, dyspraxia, physical disabilities. I've never clicked with mainstream and "popular". I didn't realise until I had DCs that I needed so much alone time as I naturally got it so craved socialising instead.

Funnily I was talking with another relative and wonder if my mother could be on the spectrum. She's moved around a lot which has always been attributed as the cause of difficulty in establishing friendships, and tends to have intense friendships for a few years until they fizzle. She gets into things for a few years and latches on to identities and aspirations. We don't have the easiest of relationships as unfortunately her maternal instinct didn't kick in until I was an adult (I lived with extended family) and then she wondered why I didn't want to be mothered. Things not going her way can trigger intense emotional outbursts and she can lay her emotions heavily on people.

I've discovered in adulthood that nearly all my paternal cousins are dyslexic/ dyspraxic. There's a couple of characters who could potentially be on the spectrum. My father certainly is an unusual character and has never had a serious relationship. He's a quiet observer type. Hasn't lived up to his high-achieving background and needs lots of quiet time outside.

I seem to be analysing everything at the moment!

My ds is 4 and non verbal, diagnosed at 2.5. I strongly suspect I am autistic having now done some research on the presentation in girls. I have struggled with mental health issues, anxiety and eating disorder since I was a teenager and have always felt very socially awkward, even from a young age. I was always seen as bossy when I was young as I was very limited in how I wanted to play. I score very highly on the AQ test and also have a high degree of hyper mobility which is often seen alongside autism. I often wonder whether to seek a diagnosis but I am not sure there is much support for adult, high functioning autistic people so haven't bothered thus far.

elf my parents got so frustrated about my inability to cope with noise. It's difficult to explain but I just hate it, it almost hurts and it still scares me now.

I do actually think I may have dyscalculia. Oldest Ds is dyslexic. This was picked up quite late with him. I then suddenly realised that maybe I struggled with numbers and maths because there was something wrong not because I was stupid.

I cannot do maths, even simple things. It looks like a foreign language to me. I could never understand it as I was an A grade English Gcse student but I tried twice to pass maths and I just couldn't. Even when I'm taught how to do it, it doesn't stay in my brain at all! I'm a reasonably intelligent adult that struggles with basic primary school mathematics and number work.

@Punxsutawney I am the same! A* and A grades at GCSE in things like English, Lit, History, Biology etc but Maths and physics I was just appalling at. I had to resit my Maths GCSE twice to get into college and even with private tuition I only scraped a D. Had zero problem with A Levels either I did well with not too much effort at exam time because my memory is excellent. I just do not get maths. DH ironically is a mathematician and when I had to sit qualifications for work in my twenties I needed to do a numeracy module and he helped me but was astonished at my utter lack of grasp on the subject even at a basic level.

Was a very early reader and writer. We just say I'm a words person and DH is a numbers person!

elf it's amazing when you think about it really how years ago there didn't seem to be any explanation for our struggles. I would be hopeful now that if a young person had a spikey profile like that and was struggling so much with numbers that it would be picked up on.

Saying that Ds's autism was ignored for years. He has significant interaction and communication difficulties but it has taken this long to get a referral and a diagnosis finally at 15. That in itself has caused him so many issues.

@56marshmallow, yes, I was also kicked out of pre school! And for a couple of years in the infants', regularly punished by being asked to stand facing a wall (which wasn't particularly effective). Even after the punishment period I remember the word 'facetious' being thrown my way quite a bit.

I’m almost certain I have asd. My daughter was diagnosed at 2 and my son is awaiting a diagnosis. A lot of the things my daughter does now I use to do as a child. I was always considered to be “weird” and that’s what it was past of as. I don’t think a diagnosis will be beneficial now though and I’ve heard it can be a negative thing.

Goodness this thread is well timed!! This is exactly me. OP your starting post resonates with me so well. My youngest was diagnosed a year ago and since then I've read so many books and papers on the topic that it's turned a lense on my own childhood. I found so many things difficult but always put it down to my chaotic childhood. Now as an adult holding down a ft job, married, kids etc I look fairly sane but people always say I'm too direct, I hate change, have terrible misophonia, and like pp I can socialise brilliantly, almost as though I have an 'on' switch, but then will need days to recover. I love having people over for a few hours but detest people staying for days and days. Some on the posts on here about MILs coming for weeks on end fill me with horror.

I don't have children, but when I became a teacher and studied autism i recognised a lot of my own experience in there. Teaching was incredibly difficult, of course, as I struggle, like others, with noise and unexpected events in particular. But I like to think I made my classroom better for the children who struggled with those things too.

This post is actually comforting.

I have long suspected that I am on the spectrum and I have had some support from Autism Network Scotland. I have not pursued a diagnosis though, as I'm quite "high functioning" and I'm not sure how it would improve anything.

However, part of why I've been reluctant to have a child is because I'm scared I would pass it to them. I have nightmares about struggling with an autistic child when I, myself, find life so bloody difficult, tiring and confusing.

It's comforting to hear that autistic parents "get" that side of their child and can connect with them. I supposed I assumed that it would be a huge barrier and source of frustration.

Well I am also finding all of your experiences comforting too, so thank you for sharing.

I will probably never know for certain. There is no real need for me to take NHS resources to pursue an assessment when in reality nothing would change for me one way of the other. I am ok, I find some things hard and I have traits that others find odd/annoying/rude possibly but my day to day life is fine. Perhaps if I ever have a few spare thousand pounds lying around (unlikely) I'll have a private assessment.

The only thing that I find is getting worse is the socialising thing. It's like one pp said about having an 'on' switch but then being exhausted. I find that it takes more and more effort to switch on as time passes. I was really quite sociable as a person in my twenties. I'm not now. That could partly be to do with having two small children though!

@amusedbush I definitely do feel like I 'get' DD and no one else does. Our bond is rock solid. I did however, find becoming a mother much more challenging than any of my friends. It's the hardest thing I've ever done. Now that could be because we had a rough start, or it could be because DD has ASD and was very challenging - or it could be that I do too and that adds to how tough I found it. Who knows!