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.

Why is that @rightknockered ?

harry I thought that about getting a diagnosis for ADHD - if they say I haven't got it I really am just lazy and stupid! I would have been gutted...
Actually I had a chat with DSis about it - she was sceptical. I went through a list of my 'faults' as a teen - she said oh you were just careless, lazy, etc . I said they are all also symptoms of ADHD...she seemed to agree it was possible. BUT when I told her I had been diagnosed she was really shocked - so actually she did think I am just lazy and careless and selfish etc

Actually I think I know a mother with ASD. She has a DC diagnosed. She is quite cold and distant, just a bit 'odd' (and it isn't a personal issue, she is the same with others...). I wonder if since having her DC diagnosed she is wondering about herself but I doubt she would do anything about it. I know her DM was set against having the DC with ASD assessed - she thinks they just need the right diet and shouldn't be vaccinated (sigh). Caused a bit of a rift. I can't imagine how she would react if her daughter said she was getting assessed too...

Actually was hassled by someone yesterday on-line, and haven't been able to function socially at all since, feel wiped out by it. Spend yesterday with my boyfriend, feeling anxious, with the strange stress feeling in the pit of my stomach. Especially since the one hassling me has done it before, and probably will again. I think she can sense my problem, and enjoys attacking me. I know I should probably leave the WA group for my sanity, but I can't seem to. It's another thing I can't abandon, even though it may not be good for me.

When I had my assessment, the first part was an ados assessment with a clinician. The second part was a three hour chat/assessment with a psychiatrist.

My ados assessment said I was not autistic.

My assessor walked out the room to the psychiatrist and said "the ados says she's not autistic, but ignore it, she clearly is".

Apparently in thirty years I'd become very good at answering the right questions and trying to do the right social queues!

Re. the empathy thing: a few autistic acquaintances of mine were saying recently that actually a lot of allistic people are terrible at reading people, because what they think of as “empathy” is actually projection that sometimes coincidentally happens to match what the person they’re projecting onto is feeling. And that autistic people don’t do that so much for some reason (I can't remember what it was). That could feed into any inadequacies in test design.

And PolterGoose is right; that seems to be another hot topic at the moment. A lot of allistic people seem crap at reading autistic people, to the point of claiming they’re making totally different facial expressions to the ones they're actually making, it’s so weird! Autistic people possibly being better at reading NT people than the other way round simply because of having to “pass”, often for decades (which can be exhausting).

PlayOnWurtz [Mon 26-Dec-16 22:33:28]

"Does anyone else find situations cause this weird feeling of not pain but it's the only way I can describe it. Eye contact and noise cause me pain like a weird fuzzy in the head type thing"

Yes! I’ve always called it “white noise”. It feels like the static on a TV that’s not connected to an aerial, but inside my head. For me it's mostly connected to being in the presence of other people for too long, or when they're present in too large a number.

@JeepersMcoy Thats fascinating to hear you say that because thats exactly how I am and Ive never met anyone else like that, Ive had housemates ask me to "play any music you want except that track because we cant take it any more" and yet one day ill go to put it on and think "nah, done with that" and not listen to it again for years.

I cant deal with feeling like I have to do something though, even things I know I want to do - if it doesnt feel like my choice right now, I wont do it. I still struggle with things like brushing my teeth, and Ive not watched TV shows or films for literally years because everyone tells me "you have to watch it, youll love it!" Once its old news and the pressure is off, Ill suddenly decide I choose to watch it (and then love it, and confuse people by suddenly loving what was last years big show).

"Does anyone else find situations cause this weird feeling of not pain but it's the only way I can describe it. Eye contact and noise cause me pain like a weird fuzzy in the head type thing"

Yes
Being in a noisy or crowded over stimulating environment eg kids party, shopping mall
Listening to multiple things at once, eg conversation with intrusive music or tv in background
Worse if I'm too hot or hungry or thirsty

My head feels very "full" and fuzzy, I'd describe it as a physical sensation of white noise without the actual noise (which makes no sense ). I can't think straight until I get away, and can unfortunately be uncharacteristicly rude until then as I can't process a conversation to reply politely. It feels mentally painful, not quite physical pain, but similar

I thought everyone felt like this and people who played background music were sadistic arseholes and shockingly insensitive, until I was complaining about the playgroup volunteer who turns the radio on, meaning I can't go to that playgroup anymore, and how can anyone tolerate it.... and my friend looked at me like I'd escaped from an asylum

Wow, "white noise" is a perfect description of how I feel in crowds or in situations with multiple conversations going on as well (I hate, hate, hate going to pubs or restaurants in groups). It's like my head is going to implode and I can't focus on anything.

Hopelessly I know just what you mean about background noise and music as well. I like silence and can't work or concentrate with music on in the background. It's like I get sucked into it and can't then concentrate on the thing I am supposed to be doing. I like silence.

@stormtreader it's nice to know I'm not the only one. I will bore everyone to death with my latest obsession for a couple of months and then drop it and never do or mention it again. It tends to happen a lot with hobbies and I have now learnt not to allow myself to spend lots of money on something I am obsessed with as I will inevitably grow bored in a few months. It also causes problems at work as I will focus like mad on something for a while, becoming an expert on it, and then as soon as I get bored I don't want to work on it anymore. I have developed a reputation as someone who is good for solving problems or sorting out difficult areas, but rubbish at ongoing routine tasks. I do wish I could just stick at something some times.

Yy to the short-lived obsessions! Mine rarely last much more than a week & once it's over it's the last thing I want to do, regardless of whether the project is over. I just have no ability to stick with things I'm not interested in - it feels like wading through thick mud.

I did the empathy test & got 12. I was convinced I'd done pretty well on it!

I'm finding this thread really interesting. Can we move it somewhere so it won't disappear?

I read all the traits out to my DH and he just went "well that makes sense then" I am undecided about Pushing for diagnosis.

V. interesting thread. Ds (5) is diagnosed Autistic. I did the the AQ test out of curiousity and got a high result, possibly Autistic. Dont know if id bother to go for an official dx. Wasnt sure of some of the questions tho. Like the working with other people. I hate having to share a job with someone. Because they might do it differently to how i want it done and id have to compromise and theyd maybe not to it to my standards . But i like doing my job alongside other people if that makes sense. I like to be social to other people whilst im working (solely) on my job.

Just did the empathy test and got 20/80 i genuinely thought id score high on that as i thought i was a fairly empathetic person. FFS. Am i a total shit in rl and just no one has told me.

I found the empathy test. I considered myself reasonably empathetic. I scored 12 The big thing for me I think is that social things just confuse me. I never know when I'm supposed to speak and for how long.

I'm good at listening (because I don't like talking) but any advice I give tbh is just me regurgitating back to people things they just told me because usually people already know what they "should" do.

I sat down with the list of aspie traits in women from help4aspergers with my DH. He was just ticked them off in his mind I think. A couple I was sat there saying well I don't do this and he was like well actually... I think really looking at it has helped him understand my quirks more. It also helps me understand myself and tbh to be a bit kinder to myself.

I can't decide what to do next. Right now my DD is in the system I'm not sure if I can face going into it as well.

My DS is diagnosed ASD (PDA) and my DD is on the waiting list for ADOS. My uncle has diagnosed ASD. I score 40ish on the thingy test. I tick so many boxes for ASD but also for ADHD, and it answers so many things about my life.

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. Never mind the fact I told them I had only got as far as I had because of my impulsive risk taking, geek skillz and extremely supportive husband.

I was told to take up mindfulness and do Zumba for my self esteem/depression/anxiety issues and go on parenting courses for my ASD/PDA son, even though I've already been on 70+ hours worth of parenting courses over the years and could probably write a book on parenting an ASD/PDA child.

I don't even think they read the supporting documentation. Heck, when I went to the doctor last week I saw the notes the nurse sent over and the first thing it said at the top of my notes was "LeftoverCrabsticks' DH thinks she does not have ASD or ADHD" which is TOTAL BOLLOCKS as I never said any such thing and neither did he - he wasn't even there! He agrees with me and thinks I have both having also done his research. So if they couldn't even get that right..

I'm now trying to go private but despite emailing two places, neither have replied and I'm scared of using the phone (another ASD trait..) and I'm terrified of being knocked back again. It has really upset me and made me even more depressed and doubting myself as I'd finally found some inner peace when I recognised all the behaviours in myself.

So be warned, if you do go for a diagnosis - be prepared to face stuff like this. It was my worst fear I wouldn't be believed, and it came true.

I was on the other threads, but posting here, mainly so I can find this again.

Can someone please post a link to the empathy test?

for you left. It's my fear too, my DH also agrees with me, I have him reading a list of traits I wrote right now, to get his perspective on it. So far its "sounds like someone I know."

I initially emailed a place and they eventually got back to me saying tney couldn't help, but months later they sent me a message saying they had kept my details and were now in a position to help. I'd try again if I were you. Or apparently Tanya Marshall does Skype appointments if that would be any help?

empathy test

Thank you Polter :-)

HarryPotter - Exactly. I don't think these people realise what a huge mental effort it is to go for it, and there's no way we would do it if we weren't sure. I mean, it's not something you put yourself through for the lulz, is it?! Having said that, there may well be a lot of hypochondriacs out there for all I know.

I don't think I could face Skype either!! I hate any sort of audio thing - I have terrible auditory processing ability, which combined with the anxiety leaves me a total mess!! Ironically my hearing is amazing, just.. crap with words and accents especially.

I just did the empathy test. I thought I was fairly empathic (another reason I didn't suspect ASD for years) but I scored 17. I suspect so much of it is learned behaviour, or over-empathising but not in the "right" way if that makes sense?

I got 14 on that test.
I'm pretty sure I have ASD, I have two daughters with autism and a son as yet undiagnosed.
My brother was diagnosed with aspergers as an adult and some of my Uncles are definitely on the spectrum. I wonder about my mother too.
It's hard to get a dxd on the NHS where we live and I don't think I'd bother going private, but it does help to know that there is an explanation for my differences.
It also helps me understand my children but I'm not sure it makes me a better parent or wife.

Interestingly the AQ test and the empathy test are both questionnaires that the mauldsley sent me to fill in prior to my appointment.

They also sent copies for my partner to fill in about me.

What I am finding interesting is that all of us who have done the empathy test have scored really low and been surprised and described ourselves as thinking we were empathetic.

I don't mind if DH has to fill stuff in, he agrees with me anyway. If they need to involve my family then we have a problem as they just won't get it at all.

Also what I'm unsure about, is everyone on these threads has a family history of it. I don't. I don't know anyone in my family who I'd say 'yes, tbey are on the spectrum. I'd say a lot of them are difficult and not particularly nice and I'm not really bothered about them but I'm not sure they are on the spectrum. I have a few cousins who certainly have issues, 2 seem to be compulsive liars, 1 I wouldn't be surprised if he had ADHD or bipolar, definitely something not right and he has a long history of issues that his mum has completely ignored, another cousin, well I get on well with him but if he turned up on the news one day, it wouldn't surprise me, same with possibly ADHD/bipolar cousin. I have wondered about DS as he can be difficult to deal with but socially he seems fine, makes friends easily, has a good group of friends, although he seems to follow the crowd a lot more than I thought he would and I'm pretty sure he takes crap from his 2 best friends although he doesn't say anything. But he has an intense car interest and has done from when he could talk and can be quite extreme in his reactions to stuff and is generally a struggle to deal with. In some ways he is a lot like me so I try and empathise with how he is feeling but there is just no telling him. He is soooooo strong willed, stubborn and argumentative!

BubbleFairy if I seek referral it would go to the Maudsley. Can I ask how you found the assessment? I think I have strong learned behaviours, so I think I conceal my problems well, I'd be worried of the shitty assessment LC describes. Were the Maudsley on the ball with assessing female ASD symptoms?

Do you need to take a parent with you? What did their part involve? I am not close to my parents and would feel very awkward talking to them about this, although I would if it would help my diagnosis. Does the parent sit in during any of your assessments?