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.

Harry, my mum refused to come with me. And I'm not in contact with my father's side. They did it with just me and V. Supportive DP (who was going to refuse to leave unless they diagnosed me he said!)

My mum refused for a couple of reasons. saying my sister was worse than me. Saying she had asked for a referral herself and been told no (so I think was jealous of mine) saying she couldn't remember my childhood.

She's been better since the diagnosis. She wouldn't even fill in a paper questionnaire for me before.

Snail, the Mauldsley are the lead in female older patients with ASD. They are incredible - like I said previously, my ados came back as non ASD, but they knew from our two hour meeting I was.

I had two hours alone with a female professional for the ados. DP came and sat having a coffee. I then had him with me for a three hour ish chat with the psychiatrist. The diagnoses were given that day.

They do like to have parental information, in the way of questionnaire or phone call if nothing else, but it's not always needed. I could remember a lot of my childhood tbh,and had a lot of information about my birth/early years anyway.

An ASD person does not know what you are feeling. He literally can not see it. He has to be trained in a mechanical way to understand consequences of his actions. "Gee, I notice that the last three times I called someone stupid, they yelled at me. I don't like that, so I won't call them stupid anymore." But he does not truly get why the other person was angry--he was stating what he thought of as a fact. Why would someone get mad at hearing a fact? When it is explained to him and when you ask how he would feel if other people thought he was stupid, he will understand his statement was insulting. ASD people do not use words as tools to manipulate. They speak what what feels like truth to them without a filter.

I just read this after googling a bit about empathy. This might sound stupid but the bit ive bolded, isnt this how everyone learns empathy. They think how they would feel in a given situation and can then sort of extrapolate that in a general sense?

I got 20 on the test but as I was answering I knew that some of the things I was ticking is because I know that's how you're supposed to act, rather than how I naturally would act. So so much of it is learnt and a mask.

Miss stein, I think the difference is it wouldn't need to be explained to a NT person. Though I'm not sure it's a great description, tbh.

I was so ostracised at school that I basically spent most of my childhood studying others from the outside looking in. And devouring fiction books, learning about what makes people do/act the way they do. As a result, I've ended up pretty good at providing support because I've learned how to do it well and I've learned people feel X when Y happens.

I can also get away with brief small talk things for the same reason, but if I'm stuck somewhere for more than the initial exchange of pleasantries I either eventually overshare and/or say something weird or talk about myself constantly and, well, that's me labelled as "different" again.

I think that's why I get on mostly well with the school gate mothers - I'm never there for long enough to screw up (the year group I get on least well with are the ones I've socialised with the most) And on Facebook I have the time to carefully craft "normal" posts.

It's all about the masking, I'm not even aware I'm doing it most of the time. And it's bloody exhausting.

well perhaps not adults as it is something which is usually learnt in childhood but surely all children autistic or not have to be taught that? or do nt children just know this? yh i agree its not the best description.
This is how i teach my son to have empathy (by trying to put himself in someone elses shoes), but assumed thats how all adults initially learnt empathy as children, nt or autistic.

I think perhaps the difference between NT children & those with ASD is that the NT child will notice how someone responds to being called stupid & therefore not do it again. A child with ASD will need the other person's reaction explained. It's true of my DS, although even after the explanation his behaviour doesn't always improve. We're going through a difficult phase atm.

Totally agree with the masking. I sat in on my DS's ADOS & the entire time I was calculating what the responses "should" be for a NT/ASD diagnosis. I feel like I'm manipulating people sometimes, or it's more that I second guess myself & worry that I've subconsciously tried to manipulate them, because I over think behaviours & so behave how I think I "should" to the point where I can't tell if I'm being the real me or not. Gold star if you've followed that convoluted train of thought! I'm scared of going for my own assessment & I'd know exactly what to expect because I wouldn't be able to stop myself googling. If I knew what to expect then I'd know how I "should" behave & so wouldn't really show "me". I'm also scared that I'd know what the ASD responses would be & so would play up to the stereotype to get the diagnosis. My brain hurts just thinking about it all!

I hate questionnaires that expect me to respond to "people often tell me..." type statements. No-one would tell me I'd been rude/not behaved appropriately - none of my friends/family would be so rude! People must have some very rude people in their lives if they're often told they aren't socially acceptable! If I were sent a paper version of those forms I'd have to write a note explaining why I couldn't answer those questions... this would probably tell them more about my ASD-ness than if I'd actually answered the questions!

I also fear getting a dismissive response like LC, because I've already had that from when I participated in research looking for adults with undiagnosed autism (at the Maudsley), and was told I just had anxiety even when I ended up arguing with the scientist about why her tests weren't valid and my extremely autistic friend would also 'pass' them - eg if you read up on child development it tells you how to 'read' a childs picture book and what to look for and point out to the audience, like idioms and ask how people might be feeling. I can't understand graphic novels for adults though. Similarly I got graduate -level jobs by following all the rules, in a group exercise keep track of time, check everyone has had a chance to speak, etc. I get on fine in initial meeting people especially in work where you can cut waffle and get straight to interesting stuff, but later it becomes clear that most other people are meeting up to socialise and further their connection, but don't want to with me - unless they are equally geeky and bad at getting promoted! Ditto baby or hobby groups - seem to be having nice chat when there's a group of us, but then people meet separately and the group dwindles - it's that next step I can't do, unless the people are similar to me.

So assessor types ask if I have friends and yes I have lots, but all met either online or via groups where the majority are autistic!

It would also explain why my phone problems are worse than expected from my degree of deafness, if it's a neurological issues that means i can't filter out background noise. I once read about a torture method used in East Germany called the glockenspiel, where a metal bucket was put over someone's head and it was beaten with sticks. So much of my life feels like that.

I thought I was showing lots of empathy when filling in that EQ, but apparently get 17/80. I wonder which questions were weighted heavily or if any questions needed to go together to get points.

That test was so helpful! I scored 52, despite feeling un confident socially speaking. It helped me understand some of DHs behaviours. There are things in there I wouldn't have connected with empathy, but it makes sense now and will help me be more patient.

BubbleFairy thanks for the info. I'm glad your mum's weird attitude didn't stop you getting your diagnosis.

Does the questionnaire they send relatives disclose that you are being evaluated for autism? I'd be happy to tell my mother I was having a psychological evaluation and ask her to complete some forms for it, but wouldn't want to mention autism before I had a diagnosis, in case I was wrong. I would probably want to say it was a general assessment or required by work for example (she would believe this). Would this be feasible??

So I asked for referral. After a few months I saw a triage mental health nurse* who spent 40 minutes talking to me, before reporting to her superiors who I did not meet. I took along over a dozen sides of A4 detailing exactly how I met the DSM criteria for ASD and ADHD. I thought it would be a shoe-in.

Long story short, I was told that because I was "too successful" (married, with children, and work full time in a decent computing career) there was no way I could have ASD or ADHD.*

SNAP!!!!!

Ridiculous, isn't it?! However, I was unofficially diagnosed by a specialist counsellor last year.

Sorry, going back a bit, someone said that they had no trouble doing the short sharp conversations at the school gates but had trouble following through. I'm outside the school now, having watched all the goings on and it all fell into place. I am ok with 2 minutes of chat. No problem. And I have a group of about 6 women that I consider myself friends with, we go for coffee and have had gatherings at houses etc. I am always invited and they seem to like me. But, they're all more involved with each other than I am. One will ask how a particular problem is and they'll all start discussing it and I realise I have no idea what they're talking about. It's not done maliciously and they're lovely but even so, it just doesn't include me. Walking though everyone hanging round outside the school chatting, as I do every morning to get to my car, I just felt so alone and it hurts that I can't seem to do what everyone else does. It's been the story my entire life. Maybe I'm just not very likeable or interesting?

Hi all,I can't post too much as have got to get ds2 to tennis! I felt I had to post as ds1 was dx with aspergers in March 2015 and then in the December I was dx with the same. I went to the Lorna Wing centre where ds went and was dx by Judith Gould the co founder. I chose to go privately and pay because I couldn't cope with trying to justify it all to the GP and be told,like many of you that I have coped for long enough that I can't possibly have it. It made a huge difference getting the dx but I have also struggled with it otoh. I am currently constantly accused of milking it,using it as an excuse, and other such nice things when I am going through a bad patch. I'm on ad's which keep me on a fairly even keel. I still struggle to do many,many things and deal with ds's and dh and maintain that happy family thing.

I'll come back later and post more.

When my DC was diagnosed with Aspergers the paediatrician said she was sure that I had Aspergers too.

I score 42/50 on that AQ test. I've never fitted in. I have no friends and always seem to rub people up the wrong way. I'm very anxious with traits of ocd and I struggle with social stuff (always feel like I'm talking too much and that no one really likes me and that they're laughing at me as soon as my back is turned).

As a child I was severely bullied until the age of 13, after that I was just always on the outside looking in. Other than 1 girl whom I now realise was a manipulative user and another who was nice to everyone; my books and my dog were my only friends whilst I was growing up.

I'm very loyal though and I think that I would make a great friend if people could look past my awkward social skills and give me a chance. I'm also kind and I like to help.

I always thought I was okay at small talk, but I have realised that I go on too much and I'm too open and honest and I share too much, too soon. If people ask me how I am, I actually tell them because I forget that they're not really interested and that they're just being polite. Especially when I'm sad at having no friends and then get asked how I am. I'll say I'm down because I don't have any friends, etc, and people don't know what to say. I'm not trying to make them like me or feel sorry for me, I'm just being honest, but I think they don't know how to take it. I'm also a people pleaser and often try to mimic people that seem to be well liked in the hope that people will like me too.

I focus very intensely to the detriment of other things and I don't really like lots of noise, I find it very distracting and can't focus. I don't like people in my personal space (including my dc) unless they've been invited in, and even then it has to be on my terms or I'm very uncomfortable.

I hate liars and unfairness. I love reading and I'm great at remembering numbers.

I do struggle being a parent sometimes and I will take myself off to my room (or wherever) when I've had enough.

I'm so lonely though and I don't know how to make that better.

I've thought about getting a dx, but I'm worried it would hinder me rather than help as people can be so judgemental.

To those that have got a dx later in life; can I ask why?

I've not had a diagnosis but I'm going to try. I've felt so lonely today after this morning. I've got to find out why I'm like this.

snail from memory the papers all come on headed paper from Maudsley, with a link to the female assessment unit thing. Will see if I can find out, hang on....

I took screen grabs but lost the ability to attach a picture here?!

Link: SLAM services

I was diagnosed aspergers, social anxiety, ocd tendancies and borderline personality disorder (the last of which never made it into the formal diagnosis as he was worried about repercussions for me when it was so borderline)

Oh and snail, the whole pack comes to YOU. You are expected to give the forms to partners and parents to fill out. So you can say what you want ;-)

It's so interesting hearing other people's experiences of diagnosis. Whilst I'm sorry you (Polly) had the same experience, it makes me feel a bit better!! It's such a ridiculous state of affairs, and it's not actually cost-saving in the long run because I suspect most of us have problems with anxiety/depression and a better understanding of the root cause could only help improve outcomes.

Noname2 - you sound just like me in every sense! I had to check I hadn't posted your post. With regards to the school mums, it always starts out the same with every year group at school - at first everybody is totally friendly, but as the months and eventually years go on, it's quite clear I'm not quite one of them. Even though they'll chat for two minutes. I do wonder what they say about me and where I screwed up, but I try very hard to not think about it if I can. Not always possible though!

The ones I get on best with are always, always the quirky ones. Not a coincidence I am sure! Not necessarily quirky in an ASD way, but perhaps they're just more open to people who are also a bit different! I have never in my entire life managed to successfully "break" into a group of "normals" as it were and be fully accepted. Thank goodness for awesome people online or I'd never get to talk to anyone!

I can totally relate to finding parenting hard and needing to hide away. I feel for my children as I can't tolerate noise and I'm probably a lot harder on them over such things (especially unwanted music) than other parents. But given most of them are either diagnosed on the spectrum or probably are, I do understand so many of their quirks and life issues which other parents wouldn't, so it's not all bad for them!

NoName I can pretty much identify with all of your post. I want a diagnosis for peace of mind. I've said to myself if I get it, I won't be sharing it, but given my honesty and oversharing tendancies, I can imagine me blurting it out. I've already mentioned the possibility to a few friends, gaging a reaction really, and they pretty much all scoffed, well a couple haven't but one said I didn't have it and another said "fuck off have you." Sometimes I hate people.

So does anyone have it who doesn't have it in the family? I am worried that because there isn't a family history then they will dismiss it based on that.

No one in my family has it. Some of them are pretty weird but no ASD diagnosis anywhere.

Reading further, I see other traits that I share.

I get emotional very easily, but I think that I'm empathic (often too much).
I've suffered on and off with depression since my teens.
I'm obsessive but the focus of my obsessions change. If I read about or see something on TV I don't know about or that interests me, I'll go and research it and find out everything I can.

I struggled academically though. I'm told I'm fairly bright, but always had "not reaching her potential" on my reports. I did really badly in my finals at uni because I refused to sit part of the exams....I would've had to get up and present my thesis to a room full of people who would then ask me questions on it. I almost left fully rather than do that but a kind lecturer made it so I was excluded from the oral (q&a) part of the exam, but could just sit the theory exam (although it meant I was unable to get above a 2:2).

This was the last part of the exams and, at first he tried to talk me around, saying my marks were good enough so far that even doing badly in the oral would've meant I'd get a 2:1, but he saw that my fear was too great and supported me instead.

I also have very set ways of doing things and once I start something I find it hard to stop before I'm finished.

I think my DC's school finds me odd and I know that I don't come across well in meetings. I get too emotional/cross when people are lying or not listening properly. I always feel that I'm not good enough or that I need to try harder.

Leftover, I used to have the same with parents at the school gates. It's the main reason why I stopped getting out of my car and got my DC to come to me instead (so I didn't have to deal with them).

My DC is the first with an official dx, but I'll eat my hat if my DB and DF don't have it.