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.

[HarryPottersMagicWand]

I get confused by the empathy thing. My sympathy is shocking, I'm very very unsympathetic unless it's a certain situation with a certain person but I can very quickly move on from it and because I can't see or feel it, and the other person appears normal, I assume they are over it too. But I thought of myself as very empathetic. Too much so. But I did an online empathy test which was linked on a website with autism tests and my score was unbelievably low, I did so much worse than I expected.

But I did a voice test and a face one and scored higher than an average NT score but they were easy to work out by discounting some of the other options and they were just obvious plus from the 4 choices, the 3 that it wasn't were not even similar, so if the emotion was happy, the other choices would be frustration, envy and hostile so it would be obvious. Crap tests.

[thedevilinside]

I have many autistic traits - I walk on tiptoe, stim constantly, have sensory issues, can't do small talk, have few friends, jumped from job to job (making social blunders in most of them) never achieved academically,, high anxiety, including a phobia etc, but I don;t fit the stereotype, I have empathy, am good at reading people (in terms of how they are feeling and how to keep the peace) and enjoy creative writing and drama

Many family members are diagnosed, including DS, DF & DSis. DM is awaiting assessment. I ended up with the diagnosis of high aspergers traits, which has been a huge blow to my self esteem. I now am in this weird place where I feel I am not autistic enough to be part of the autistic community and have never fitted in anywhere else.

[JeepersMcoy]

I have just done an empathy quotant test and got 39. Not terribly low, but it is out of 80 and not as high as I might have thought. I found some of the questions really odd though and am not clear how they relate to empathy as opposed to general social interaction, which in my view are two different things. Every time I look at this sort of thing I get more confused about myself.

[unlucky83]

I've just been diagnosed with ADHD in my late 40s - DD1 was diagnosed at 14 and we are so similar...I am pretty certain DP has it too -which apparently is pretty common as you can relate to each other.
ADHD is slightly different because there is medication. However the biggest thing for me was the acknowledgement. There is a good reason why I find certain things difficult and for things I've done in my life. And I have actually done well in the circumstances. I feel better about myself.
Like others I have suffered on and off over the years with depression. I have been frustrated with myself -why can't I just do things? Why am I so useless? Lazy? Stupid? etc
It was done on the NHS and took a long time and was a bit of a battle at times -but I am so glad I stuck with it. Even though I was convinced I did have it and tried to take it easy on myself - having a psychiatrist agreeing that I did makes it real, I really can stop beating myself up.
I am starting on the medication to see how I get on -am on really low dose at the moment, too low to be really effective but the first time I took it was amazing. Everything went quiet, silent. It was really freaky. Made me realise that normally my brain is constantly 'noisy'.
I scored 29 on the AQ test ...but I don't think I'm autistic. I think that is mainly due to not being very sociable. I can enjoy social situations once I am there -but dread going to them and find them utterly exhausting, draining. But maybe that is because I am trying to keep the ADHD under control?

[haveyourselfamerry]

poltergoose ,

Very interesting, thank you.

"The problem with empathy tests is that they're based on neurotypical experience and expression which is often very different to autistic expression and experience. Might be worth looking up Milton's 'double empathy problem' which I think says that NT people are more likely to feel empathetic to other NT people because they can 'read' them better and likewise for autistic people - it's harder to be empathetic toward someone who's of a different neurotype"

[HarryPottersMagicWand]

"I have just done an empathy quotant test and got 39. Not terribly low, but it is out of 80 and not as high as I might have thought. "

My score was 13.

[CloudPerson]

Mine too Harry, I always thought I was ok empathy-wise. Some things I'm ok with, other things not.

[G1raffePicnic]

My empathy came out okay.

[StarsandSparkles]

My mum has always thought i have a mild learning difficulty from i was wee but nothing was ever done about it and ive often wondered if it is why i am the way i am. I scored 29/50 on the aq test which indicated autistic / aspergers traits

[toffee1000]

I found an empathy test and got 17. Thing is with these tests is that there's no middle ground- it's "strongly" agree, "slightly" agree, "slightly" disagree or "strongly" disagree. Nothing in between. Some of the questions I was thinking "well I don't really know/feel particularly strongly either way".

[jennifermae]

I have been told by a few people who are either ASD themselves or have someone close to them who is that I have ASD traits and should look into getting an asessment. I have been diagnosed since youth with OCD, BPD/Complex PTSD, battle anxiety, self-harm and struggle with shyness and being misunderstood. Also very sensitive to noise, though been told that it is PTSD thing. I have been seeing a therapist for BPD and she says she really doubts I am ASD as the BPD label covers much of my issues. I am frustrated because others keep saying I sound like I have ASD. As a child I had issues with fear of certain foods and couldn't have certain foods mixed together or even touching my plate for fear of contamination. I hated being touched, but that could be because my DF was abusive (DV) and I was sexually abused as a teenager as well?

[Beebeeeight]

Nrft but I see lots of what I think are mothers with undiagnosed asd every day.

[bearsnumberonefan]

Oh dear on the empathy test I scored 20/80. I'm not surprised as I already know I lack empathy. But with the score of 27 on the aq .... maybe I should be a little concerned

[HarryPottersMagicWand]

I thought you needed a score of over 32 for a diagnosis?

[HarryPottersMagicWand]

Ah right. "or score over and not be autistic." This is my worry actually. That I'll go through the whole thing and they'll say "nope, you are just an odd, unsympathetic slight weirdo who cannot keep a friend" . OK I doubt they would phrase it like that, but that is how I would take it.

[toffee1000]

I definitely do. Because I definitely think I'm different/weird enough to be not neurotypical, but I may not be weird enough for a diagnosis. So people won't know quite what to make of me.

[AliceInUnderpants]

I am due to be 'screened' for ASD at the end of the month. The psych was quit clear that it was 'not assessment, but screening so I can make a decision whether to refer you onwards for assessment' (paraphrasing). Is it likely to be a version of the AQ test?

[amusedbush]

I'm convinced I have aspergers and I had a sit down with someone from Autism Network Scotland who said within fifteen minutes of chatting that I'm a textbook case. I haven't pursued a diagnosis as I'm not sure what it would achieve.

[rightknockered]

I score 45 on the AQ test, have 3 children diagnosed with autism, and have a diagnosis of Aspergers.
I was the weird kid at school, but hid it and had interests that got me special treatment at secondary level, so got away with a lot of odd behaviour.
At college, doing my A Levels, I had a lot of freedom over attendance etc. I baffled lecturers by handing in 20 odd essays at once, most were late, because I couldn't organise myself to meet deadlines etc. I was anorexic for most of my teens and 20's, received psychiatric treatment, was on anti-depressants and told that I need to "learn to enjoy life". I somehow got through my A-levels, went to university, missed a lot of lectures, scraped through my first year and then got help from a very understanding personal tutor.
My life has been about jumping from one catastrophe to another, yet my life should have been a smooth road. Instead it was full of unexplained anxiety, a lot of alcohol, meddling in drugs, weird behaviour. I had a reputation for promiscuity, but didn't think I deserved it.
Looking into getting the first of my children diagnosed was like reliving my life, I recognised myself, gradually.
I cope now by engrossing myself in repetitive, almost meditative hobbies such as complex knitting. I wok in research, and am obsessive within my work.
I can not get respite for my children. Social workers become suspicious over my 'odd' behaviour, and I find myself being investigated and watched. I just struggle.

[HarryPottersMagicWand]

toffee that's exactly what I think too. I seem to be a bit marmite, people either appreciate my ways and generally find me funny or appreciate the honesty or they don't quite know what to make of me. I mentioned aspergers to a friend and she said she knows a girl with it and I definitely don't have it. Thing is I always feel like I have a 'face' on to the world to hide my ineptitude and social anxiety.

My last night out, I was extremely worse for wear and 1 friend has a lot of people that don't like her (she doesn't know this) and in my state, I went up and said "do you know what, you're alright really." Now I don't remember this at all. She told me, thankfully she was quite chuffed and took it as a compliment (it was meant as one), the friend she was with was very taken aback and was NOT sure what to make of it . She is very blunt and comes across quite brash which is why people don't like her. I actually like this as you know where you are with her and there is no hidden or false side like most people seem to have. I did tell her that I am socially inept and she seemed surprised. I guess I hide it well. I'm just glad she took it well. I'm sure in my head the rest of it went "and I don't know why people don't like you" thank fuck I didn't say that!

[rightknockered]

Pretty sure most of my colleagues are on the spectrum