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So apparently there are a LOT of undiagnosed autistic mothers around

(241 Posts)
Nicknameofawesome Mon 26-Dec-16 20:36:41

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.

Msqueen33 Mon 26-Dec-16 20:52:31

I'm the same. Diagnosed with something else but strongly suspect high functioning asd. I've got two DC with autism which has what has lead me to think thought.

Crankycunt Mon 26-Dec-16 20:55:45

Autism presents differently in females than it does in males, the amount of women and girls who are undiagnosed is staggering.

Nicknameofawesome Mon 26-Dec-16 21:17:37

I suspect a lot of it is because for the longest time it was thought to be very rare in women. We definately don't fit the typical mould.

helpimitchy Mon 26-Dec-16 21:21:55

I was diagnosed last year at the age of 45. It's been quite a journey and it makes me sad to look back and remember all the times I was treated like shit by, mostly health professionals, due to my autism. I obviously must have been coming across a bit oddly and they used to sense this and judge me and I have been treated pretty badly over the years.

I'm now in what I call 'societal withdrawal mode' and barely interact with anyone outside the home. Oh, and some of my colleagues ignore me now and dismiss my views due to my diagnosis. I've gone from being cute and quirky to the house 'r' word sad

I'm on extra medication to cope with it all and feel like crap, esp. regarding work.

I'm still glad to be diagnosed though as it helps me make sense of my experiences even if it doesn't actually help me.

Being autistic is really difficult and everyone either hates you or ignores you.

ihatethecold Mon 26-Dec-16 21:22:49

Interesting link.
But I don't think there's any heartbreaking stories in the link.

haveyourselfamerry Mon 26-Dec-16 21:23:04

The models of autism and ADHD are male ones. It's not just us who lack understanding....

FaithFromTheRealmsOfGlory Mon 26-Dec-16 21:25:51

I was diagnosed at the start of this year. I'm a Mum to a 3 year old DD. I self-referred via my GP for a diagnosis. I wish I'd known much earlier (I'm 35!) but knowing has really helped. I'm much happier in myself. I'm kinder to myself, make adjustments, work with it rather than fighting against it.

I have very mixed feelings about that article. It's good that it's highlighting the number of women who haven't been diagnosed. I was previously diagnosed with 'Generalised anxiety disorder' but actually it's quite a specific anxiety issue related to the ASD. However I suspect very few people will read that and feel confident to go and ask for a referral to be assessed! I never had any issues with going down the NHS route, no question over my parenting but reading that makes me worry (and I was fine!).

Snailandthemale Mon 26-Dec-16 21:25:54

I'm also wondering if I might be autistic.

Not sure if I'd meet diagnostic criteria though, esp as I function well on the outside, although I do have anxiety

The two things that put me off seeking a diagnosis - 1. The doctor/ psychologist might think I'm a hypochondriac and roll their eyes at my internet navel-gazing 2. We have someone in dh's family who is quite badly affected by autism, and this causes dh worry, and I feel daft for suggesting I might have the same condition as dh's relative as I'm so different to him

Dh saw a list of traits I was reading online and said it was ridiculous and statements that anyone would agree with some. I closed down

I've started verbalising things that go on in my head now as a kind of introduction to the idea, and dh is pretty perplexed about some of my thoughts!

TheSecondOfHerName Mon 26-Dec-16 21:27:07

DS2 (14) has ASD and my dad almost certainly does, although it has never been diagnosed. It didn't quite 'skip a generation', as I have a lot of autistic traits. I have learned coping strategies and can function well at home and at work, so have decided not to request an assessment. DD (12) has some autistic traits, but at the moment she is functioning and coping well, and she also says she doesn't want to be assessed.

gamerchick Mon 26-Dec-16 21:30:40

It's great that more awareness is happening and the net is getting bigger. They do say now if you find a child with autism then there will be a family member probably undiagnosed close by.

More heartbreaking there are probably more females entrenched in the mental health system with labels such as bpd who are in fact autistic. It's very hard to get them assessed even with the heavy pestering from a carer without the patients asking for assessment. No idea why.

CloudPerson Mon 26-Dec-16 21:30:49

I was diagnosed this year aged 40. It was a huge relief and explained the problems I encountered with the experts who assessed ds2 and with CAMHS every time we were involved with them.

The heartbreaking parts are that many of us are vilified and assumptions are made about our parenting because we don't fit the rigid expectations of the experts and they assume that we are making everything up.

The whole system needs a massive overhaul, but I can't see that happening as diagnoses cost money and it's cheaper to,carry on blaming parents.

sonlypuppyfat Mon 26-Dec-16 21:38:55

I am quite interested in this, when I was at school, college etc I never ever heard of autism but now it seems like it's everywhere I often wonder why this is

LittleMissUpset Mon 26-Dec-16 21:40:03

It was only by researching as DS1 is awaiting assessment that I happened to read about how it's different in females, that I realized I'm on the spectrum.

It's a relief to understand why I've always struggled and I'm 39.

I'm thinking of getting a private assessment as I want to know.

I'm glad I can finally understand why I've never felt like I fit in and find certain situations stressful that others don't.

CloudPerson Mon 26-Dec-16 21:42:31

Sonly - understanding is getting much better. When you were at school it's likely that some of your peers were autistic, but there wasn't the knowledge to identify it.
I can look back in hindsight and identify several people who may have fit the criteria.

gamerchick Mon 26-Dec-16 21:43:32

I am quite interested in this, when I was at school, college etc I never ever heard of autism but now it seems like it's everywhere I often wonder why this is

You never met someone who was labelled as 'odd', 'quirky', 'eccentric' or anything else that was considered out side of the 'norm'?

We had remedial classes when I was at school a million years ago.

It's always been there, you're just seeing it more now because people are hearing it more.

Nicknameofawesome Mon 26-Dec-16 21:44:50

But I don't think there's any heartbreaking stories in the link.

Personally I find this stuff upsetting:

"Melanie Mahjenta was accused of a rare form of child abuse, fabrication or induced illness (FII), by social services during her fight to get her three-year-old daughter diagnosed with autism.

“Rosie was made a “child in need” because for three and a half years, I kept challenging the doctors who refused to diagnose her,” said Mahjenta. “Looking back, I probably did put people’s backs up because I’m autistic. But I knew how hard life would be for Rosie if I didn’t get her the right support."

and also this:

“The assumption is that being autistic for a mother instantly raises concerns as to the welfare of the child,”

It's very difficult still as these stories don't exactly inspire me to want to get an official diagnosis for myself or my daughter even though I know it would help her hugely. It's a fight to be recognised and a fight to be treated right.

AnotherSENMess Mon 26-Dec-16 21:51:24

I was dx'd at 33. My ds and I underwent assessment at a similar time and, as with others, it was whilst looking at ds I realised I had a lot of the same traits.

For those that are interested the AQ test (autistic quotient) can give you an indication of how likely you are to be on the spectrum. It isnt a diagnostic test on its own, but is often used as part of the assessment.

There are a large number of women out there who are undiagnosed, or wrongly diagnosed with other conditions. And that is mainly because females present differently to males on the spectrum, as well as the fact that for many years it was deemed a male condition. It is only relatively recently that an understanding of how females present is becoming known, and so diagnoses are becoming more common.

Nicknameofawesome Mon 26-Dec-16 21:54:13

I am quite interested in this, when I was at school, college etc I never ever heard of autism but now it seems like it's everywhere I often wonder why this is

I imagine most of it is purely down to awareness. When I was younger it was thought that: autism was a male thing and very very rare in females, autistic people weren't academic at all, autistic people do not have any form of empathy. All these are untrue but it's only now emerging.

Also a lot of autistic traits are dismissed as something else. Shy, clumsy, "a worrier", nerdy, geeky, odd, wierd, eccentric, daydreamer, loner, fussy eater etc etc.

FaithFromTheRealmsOfGlory Mon 26-Dec-16 21:54:31

The phrase I probably did put people’s backs up because I’m autistic really resonates with me. I've lost count of how many times I've said There's just something about me people just don't like. My issues are only hmm really bullying, both as a child and in the workplace, often resulting in dreadful anxiety and depression issues, but it is heart breaking. I'm a nice person! I think it's just my bluntness that puts people's backs up?! I try to moderate myself but essentially I go against my very nature to do it all the time. It's exhausting and never fool proof. I can't imagine how awful it would be to be accused of deliberately hurting your child when all you're actually trying to do is get the right diagnosis and support.

Mindtrope Mon 26-Dec-16 21:58:43

Very interesting thread. My Oh has just been diagnosed as autistic, having dyslexia and dyspraxia by his amazing employers. He has a very good IT career, very high functioning, but family has just loved his odd ways.

Nicknameofawesome Mon 26-Dec-16 22:02:33

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

I'm like this as well. I can't abide anyone lying to me so if you bullshit me I will call you on it. I can't help it. I think that's probably the biggest thing that's caused me issues. There are a lot of charismatic charmers in this world who win people over with their lovely charming but inately bullshit persona. I see straight through it and call a spade a spade. They don't like that and I end up as the bitch.

Aroseforemily Mon 26-Dec-16 22:08:08

This is really interesting, after a quick bit of research about traits in women I appear to have many of them. However I can't see the point in getting an official diagnosis.

CloudPerson Mon 26-Dec-16 22:10:18

Our local children's services for diagnosing ASD are dreadful, unless the child presents in an obvious, stereotypical way, parents are blamed. Our local CAMHS appear to have no understanding of autism at all and blame parents. If you're a parent who comes across differently at all yourself, you're going to face more difficulties because they will use and twist information and use it against you, and in my case, I often didn't realise this had happened until a few days after the appointment when I'd had time to fully process everything. Experts need far better understanding all round, of both the children on their caseload, and that there's a good chance one or both parents may be on the spectrum themselves.
My main saviour in all of this has been my amazing GP who was at school with me and saw for herself that I was very different to my sisters, and I have known her for years. She has been an amazing advocate for both me and my son. I imagine things would be very different if we hadn't had her on side.

ArgyMargy Mon 26-Dec-16 22:10:54

"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.

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