So apparently there are a LOT of undiagnosed autistic mothers around

[Nicknameofawesome]

Trigger Warning - This article contains some stories that are heartbreaking.

www.theguardian.com/society/2016/dec/26/autism-hidden-pool-of-undiagnosed-mothers-with-condition-emerging?CMP=share_btn_tw

I find this fascinating and terrifying in equal measure. I am currently fighting for an autism diagnosis for DD(12) and have realised that I am myself autistic. I find it comforting that there are others like me, terrifying that so many of us have fallen through the cracks and horrifying that some have been treated so badly.

Overall I hope research like this will help us all to get the support, help and recognition we need for ourselves and our kids. The system has been broken for a long time. Diagnosis is difficult to get and to find that some mothers have had issues themselves and been questioned about their parenting because of their own autism breaks my heart.

I never thought I could be autistic but I didn't struggle academically (I'm a B student through and through) and I can empathise with people. I am perfectly capable of identifying with someone who is hurting it's other stuff that baffles me like how to do small talk, how to relate to someone I have nothing in common with or how to know when to shut up...

My own research and talking to family and friends about it has made me realise how little most of us know about autism. I don't fit the stereotype but I do hit 90% of the things on a list of Aspergers traits. It doesn't make me a bad mum but it does make certain things a huge challenge for me.

I hope this is the start of some hope for myself and others in my situation.

[ChatEnOeuf]

I find this really interesting. Like many, I've often thought myself to be on the spectrum (AQ of 32). I've never bothered to seek a diagnosis, and probably won't for DD unless she is seeming to struggle, she and I are very similar!

[Phalenopsisgirl]

This is me, I'm not sure how sad it is or if identifying people is actually going to change anything. At the end of the day we must learn to adapt to the world as the world will not mold itself around us, although women are far better at learning how to mimic 'normal' so it has actually been possible to learn a few of the things I struggle with or at least how to appear able to converse easily and relate comfortably, even if it's not real

[FaithFromTheRealmsOfGlory]

DISCO assessment explained better than I could! Basically lots of talking, did mine with a specially trained LD nurse, answers put in an algorithm then got a diagnosis from that.

[Nicknameofawesome]

"Shy, clumsy, "a worrier", nerdy, geeky, odd, wierd, eccentric, daydreamer, loner, fussy eater etc etc."

None of these are definitions of autism, they could apply to anyone.

That's the point. They are all things that people with autistic traits are often called or seen as. Any one of them is completely Normal and could apply to a nt person as much as an autistic person. The problem is spotting the combination of all these essentially normal traits that makes a person autistic. We aren't an alien species we just think in a different way and the combinations of traits make us come across as different, odd or weird. There are a couple of traits unique to autistic people but mostly they are just very normal things just exaggerated.

[SortAllTheThings]

Test was 39 BTW.


I feel that a lot of medical people I've come across have displayed aspie tendencies. I used to work with medical researchers, fitted right in. Ah, I dunno... I just feel like my own GP will dismiss it as nothing. I can push for physical medical stuff but this feels so different and personal

[SortAllTheThings]

Thank you Faith

[MTWTFSS]

I was diagnosed ASC aged 28, after my 2 sons were diagnosed. I just focus on making my DC life the best it can be.

[FaithFromTheRealmsOfGlory]

Admiral both my DH and Dsis (the latter incidentally works as a HCP with children with LD!) didn't think I had ASD but I did my research (that's what I do!) and I was adamant enough that I pursued diagnosis.

Sort, you're welcome! There are some areas of work that suit Aspies, attention to detail, a passion for something to go into such detail...a lot of NTs might lose interest sooner. I think a lot of medical types probably fit that spec...(obviously not saying all are!).

[AliceInUnderpants]

I am being screened for ASD next month. My eldest daughter has an ASD diagnosis, and my youngest has been being assessed for the past 18 months.

[nickelbabeinamanger]

I don't have an autistic child.
However. I first discovered I was autistic because a friend of mine who does have an autistic child posted a link to an article about teenage girls and young women who are autistic and how it presents in them.
I read all the points, totally recognised myself, knew that women didn't get assessed and put it out of my head.
A year later, lots of struggles withcertain areas of my life (or people's responses to this), I began to look into it further and to describe myself as "self-diagnosed aspie"
Till last summer, my very good friend said "are you going to do anything about it?"
I said that I didn't think there was anything.
She rang NAS for me, then Kent autistic trust. Their adults' rep said "okay, they're stepping up assessing adult women cos they're suddenly appearing" and came to visit me at my house.
"You have a case for assessment, but it's a 2year wait, here's a letter for your gp"
That was august 2015. April this year I was assessed, my official diagnosis arrived in the post a week after my 40th birthday.
Forty fucking years of being told that I'm in the wrong and should learn stuff that makes no sense, that I'm a grown up and should be able to sort this out for myself.

Fuck 'em all. Those who matter love me for all my quirks and help me understand the world.
I'm an autistic woman and NOW my world makes fucking sense!

[Wayfarersonbaby]

I myself score v v low on the AQ (I was once part of the control group in a research study on ASD) - but I'm v interested in ASD partly through my own research area. As soon as I met MIL I twigged that she was not neurotypical - she's in her late 60s and thought of by her whole family as highly weird or eccentric but she very clearly is on the spectrum (either ASD or possibly PDS). She has a whole bunch of traits - from sensory processing difficulties, strong food aversions and social phobia to various forms of anxiety/hoarding, the full triad of social impairments and difficulties with theory of mind/interpreting tone of voice and intention. It's a real shame that she has gone through her life with literally no understanding or support, and basically nothing in mainstream social life that she feels at ease in.

But because she doesn't fit the model of the male autist (highly ordered, nerdy, little professor, detail-oriented, mathematical, etc.), it's only recently that a better understanding of autism in women has emerged enough to even understand her as potentially on the spectrum. I have no doubt at all that she would get a diagnosis if there was funding or support available, but I think that's vanishingly unlikely (and she distrusts all medics/psychologists anyway).

It's a real shame that a lot of people who have been historically thought of as being eccentric, having MH difficulties, or behavioural or intellectual impairments, were often on the spectrum, and could have had a much fuller life with better understanding and support.

[nickelbabeinamanger]

I also believe my mum and dad are also autistic (actually, my dad is so much that I fully expected him to walk out of my assessment with his oen diagnosus )
Which also explains a lot of things abiut my home life and why actually, it could have been a lot harder growing up than it was (no unexpected guests or huge parties etc)

[bearsnumberonefan]

I'm a nice person! I think it's just my bluntness that puts people's backs up?!

This is me! I can be very blunt and to the point. I've learnt to be less so, but it requires effort and doesn't come naturally.
I'm not ASD diagnosed, I believe it was mentioned when I was young (80's child!) but then always said no as I interact with people and made friendships ok. But as said it presents very differently in girls. I was diagnosed as dyslexic at 15, and use that to explain my square-peg-round-hole personality. That quiz above gave me a score of 27 and autistic traits (aspergers). Very interesting.
I'm not interested in a diagnosis though, it would have no bearing on my life so what would I want one for? Out of curiosity, those that have received diagnoses aged 30+ - why did you do it?

[babytupps]

I have a 14 year old daughter with Aspergers and I also have it. I'm pretty sure my 18 year old also has it. I wondered if my baby with follow

[OddBoots]

I saw this article earlier and it really struck me. I am the mother of a DS with ASD, I am pretty sure I don't have autism myself and the things I have read about how it presents in females make me think of my mother.

I am not sure how much it would help her to have it suggested to her though, she is in her 60s and following the recent death of her parents is only just processing her abusive childhood and has recently developed three different serious medical conditions on top of a lifetime of serious depression.

[FaithFromTheRealmsOfGlory]

Odd I suspect my Dad is. I haven't said anything because he's pretty happy (also in his 60s). Very much lives in routine, has everything how he likes it and has good relationships. I doubt he'd get much from being assessed at this point.

[nickelbabeinamanger]

sonlypuppyfat
I agree.
I knew about autism as in a severe impairment where they went into a home and could never live alone/be independent.
Now more people know about it, and I discovered another friend of mine (male) was diagnosed just before I got my assessment date (he waa diagnised 6 months previously, I just found out then)
And another friend (male again) was diagnosed this year too.
Both diagnoses made perfect sense!

[nickelbabeinamanger]

I do have to beg any of you who are thinking that you're autistic to fight for your assessment on the NHS - private diagnoses are not counted on NHS statistics so won't give a true picture - it's also a lot easier to get ssupport and help if you have an NHS diagnosis
(This is what i wwas told by the NAS)

[SortAllTheThings]

I love this thread. I'd decided today, following a difficult overwhelming Christmas, that I was going to seek a diagnosis. I've been on various MN threads about this before, but this one strikes a chord. I have a friend who's been fairly recently diagnosed and I'm going to ask her about it.

[FoggyMorn]

I have 2 diagnosed DC (out of 4, and actually a 3rd DC has many traits). I guess both dh and I have manny traits - there's a lot of it about

I think in retrospect, if I were a child now, I might get a diagnosis of ASD, but like many females, I think the presentation is quite subtle.

[LittleMissUpset]

I hate peoples who aren't genuine too, who people see as charming, but who aren't really nice people.

I called someone up when I saw through their bullshit but they didn't like it, and others are fooled by her, but I hate liars, and I'm not the only one to have seen through her!

[2boysnamedR]

I know a few mums who been diagnosed as 40+ something adults. I can see where my kids get some of their traits in me.

I am fairly certain I could meet diagnosis criteria but I don't want to. I think my traits are my unique strength. I love playing by the rules hence I am a good advocate for my boys.

I have zero interest in chasing a diagnosis for myself as I think it would hinder getting help for my children. Some LAs, schools would love to pin a reason why I keep pushing back. Also at my age I have zero interest in changing. My comfort zone is ever expanding anyway. Maybe I wouldn't meet criteria as I can keep pushing my boundaries but only to a certain point.

[HeyRoly]

I've been doing a bit of navel gazing recently, and I'm torn between thinking "ASD would at least justify why I am anxious/shy/introverted/nerdy and have found XYZ difficult in life" and "why on Earth are we pathologising anxious/shy/introverted/nerdy behaviour?"

I scored 29 on that test.

I'm still not sure how I feel. I would hate to be on the spectrum and have to face up to my children potentially being on the spectrum too. But I already have concerns about my DD and am flip flopping between "something may be up" and "you're such a worrier". It's just a new thing to be anxious about ATM