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.

[Manumission]

Oh thanks for that link Jeepers

Apparently the overturning of the "people on the spectrum don't feel empathy" myth is very hot in research terms ATM.

Thank god

[mimishimmi]

I've suspected the same when my son was given a PDD-NOS diagnosis - on the spectrum but not autistic in many ways. Funnily enough, they are things he does not struggle with though. Social anxiety, rigid thinking, paranoia, can't look people in the eye so people think I'm shifty etc, do very well academically but flunk in real world situations. Whereas with my son he has loads of social empathy and connects easily to people despite a once massive speech disorder and he struggles academically dur to it.

[JeepersMcoy]

The empathy myth is an interesting one as I suspect that quite a few people don't get diagnosed because of it.

I have been convinced for years that my dad is autistic. He had all the classic traits including fixed routines, dislike of crowds, noise and unexpected situations. He is famous in the family for his obsessive habits ( he once learnt to cook a meal and proceeded to cook that and only that every day for months until my mum put her foot down). Thankfully he has a hobby that feeds his maths habit, but can only be done with other people which means he has a really good social network of people with a shared interest.

He is however very emotionally intelligent in a quiet and self contained way. When my mother was ill and when she died he was an amazing support.

I float around the border I think. I tend to get between 31 to 36 on the online tests depending on whether I am having a good day or bad day. I can't do small talk, I find loud noises and crowds very stressful, I develop obsessions with things though I tend to change my obsessions quite regularly.

However, I am very good at empathy and often get complemented on it (I am an awesome manager). My mother used to joke that I suffered from excessive empathy as I get very upset by other people's suffering and can't bear to watch programmes which depict embarrassing or hurtful situations for people.

[Manumission]

The empathy myth is an interesting one as I suspect that quite a few people don't get diagnosed because of it.

Yes! That is so true (and so worrying).

[Oblomov16]

Agree about the empathy thing. Affective and cognitive. Plus some talk of a third kind.

[ashtrayheart]

I scored 30 on the test and have a son with HFA (and I suspect my brother and bio father have asd to some degree). My main issues are with small talk, obsessive tendencies etc, but I think I am very good at reading other people and seeing things from other points of view? So I think I have traits but would not meet the criteria for a full diagnosis.

[G1raffePicnic]

Is there a link with me/cfs? I've been diagnosed with cfs, depression, anxiety all sorts and have felt I've never quite managed to cope with everyday life despite v high in/exams. I get bored easily though so although I need routine I struggle with repetitive things or need a change.

[G1raffePicnic]

I suspect maybe I have "traits" other than full shebang. Is that possible. My dad almost certainly is but it's partly the fact I found him so hard to relate to and lack of (perceived) love and care and lack of thinking about my needs that made me think I couldn't be like him. But maybe it affects me differently.

[nickelbabeinamanger]

Oh god, yeah (empathy).
I'm ridiculously empathetic.
Many autistic people are - it's the overthinking aspect I think - it's a hypersensitivity to people's feelings.

The reasons for the "lack of empathy" thing are mainly that it's difficult if not impossible to show that empathy is happening and the extreme lack of ability to do tact (blurting completely the wrong thing after deliberating really hard about it for ages). Possibly also never being quite sure what people mean or feel if they don't say

[onthelevel]

I've long thought that it is highly likely that I'm on the autistic spectrum, my son has a diagnosis; I have never really been convinced that there would be much point to me in actually seeking an official diagnosis but am very interested to hear other people's views on aging and autism so am now wondering if I should after all go down the route of seeking a formal diagnosis.

[JeepersMcoy]

G1 I am the same with getting bored easily. I am actually terrible with routine in a lot of ways. I hate doing the same thing every day, yet I am very structured and like to plan things to an extreme. I also get obsessed with things and will do them constantly for a period of time until I suddenly get bored with them and latch on to my next obsession. I find it hard sometimes to reconcile these seemingly competing traits and feel pulled between my need for change and my need to know exactly what I am doing. I am a very confusing person I think

Nickle hypersensitivity describes it really well. I find it really hard at work when decisions are made that don't seem to consider people's feelings. It is happening a lot recently due to budget cuts and what not. I am finding it really upsetting and hard to cope, more so than other colleagues I think. This tendency does make me really popular with my staff as they know i will stand up for them, but it's making me really unpopular with my management.

[Dawndonnaagain]

I think someone in Durham is researching it, Polter, apparently we react differently to neurotypical people with some drugs. Certainly that would appear to be the case in this house. I need to do stuff now, but will have a look later and get back to the thread.

[PlayOnWurtz]

I'm hypersensitive to loads of medications which because of chronic pain is a nightmare.

I can't take nsaids, tramadol, codeine, local anaesthetics rarely work, and I'm allergic to two types of antibiotics. Some have been attributed to my EDS though.

[G1raffePicnic]

Nickel that's interesting. I "Overthink" and overanalyse and am deeply aware if changes in mood/emotion. I think some of that's due to a v difficult childhood.

Mum said I was a difficult child (sniff) as I didn't do pretend play or understand dolls etc. I would have loved lego (following instructions not free play) and loved logic problems at a v young age. Loved maths at school.

I dont retain information for long though, no photographic memory. And forget faces etc.

[hotroast]

I have a DS with an ASD diagnosis, I got my NHS diagnosis of autism three years later. I had a real struggle to get DS diagnosed at first - not only because of my own behaviours which they wanted to blame for his symptoms, but also because I was a single mum at the time and wanted to blame it on poor parenting. I didn't actually have trouble getting my own diagnosis though - I've had support from our local mental health services for years, and they passed my records along so there was a lot of evidence. The autism has affected me really badly throughout my life, and I've had severe, suicidal depression since my teens and never really been able to work, I've been on disability benefits for decades. So definitely not something they could brush away as someone who copes fine without a diagnosis.

I've had bad experiences with social services and ended up having to deal with the child protection team when I was actually asking for support as a carer. So the Guardian article doesn't surprise me at all. It is all about trying to avoid spending money on resources, they played some awful games with me and I had to go to tribunal to secure a special school placement for my DS - it costs over £160k a year as his needs are so severe, so they dug their heels in and forced me to pay for lawyer even as a single mum.

I will actually admit that I don't feel empathy in the same way as NTs, and DS is similar. It is something that I accept as part of the way the autism manifests in me, but I'm aware that it's regarded negatively in a social context so I usually mask it. But I don't actually have feelings of empathy, because I just don't relate to others, and it doesn't bother me if others get upset or suffer. It's something that I've seen in other autistic people, but then some others are over-empathetic, so it seems to be a regulation thing rather than an outright rule.

[RosieRuby]

I got 15 on the AQ test, I answered honestly. That doesn't mean that I don't feel the same as a lot of the other posters on here though. I enjoy social situations but I think I suffer from social anxiety and can be socially awkward, back in the day I would of been called shy or reserved.

[NotCitrus]

I got 42 on the AQ. My ds was recently diagnosed with HFA as he finds so many things exceptionally upsetting and it's now clear he struggles with unexpected situations where he doesn't know exactly what to do. His psych said he clearly I inherited it from both parents, and while I was told by researchers a few years ago I definitely didn't, I think actually I do and this explains my history of depression and occasional shutdown much better than anything else. Basically I was fine in a graduate level job but some places I just couldn't handle while others I excelled in, and I got strange feedback when I tried to get promoted, getting near zero in "competitiveness" which apparently was important, psychs saying my questionnaires suggested I was a psychopath though talking to me I clearly wasn't, and the appraisal system driving me to total meltdown, and I just couldn't explain what things I couldn't do vs what I was really good at.
Think I'm coming to menopause so a diagnosis may be worth it. I also have a hypermobility syndrome, possibly EDS which is associated with ASD. Though thanks to the internet I have many friends, half diagnosed with ASD and most of the rest could be.

[YorkiesGlasses]

In the mid 90s I happened to read a newspaper article about a 'new' condition called Asperger's. It described me.

Ten years later when a school teacher had a private word with me about having my DS assessed for Asperger's I think I actually laughed! He got a formal diagnosis. I did ask about an assessment for myself, but my GP told me it would be a waste of time and money. I think it makes me a very good advocate for my DS though. I want him to have the support and opportunities I never had, and I will go way beyond my comfort zone to try and access them for him.

[haveyourselfamerry]

Another one very interested in the idea of excessive empathy. Both my elder son and I have this.

*AGING**

My father has suffered loss of part of his visual processing -a form of dementia. I am CONSTANTLY having to contradict hcps who wrongly ascribe behaviours which I've witnessed for 40 years to the dementia. Also people fire off sequences of verbal instructions which father has NEVER been able to process. So yes this lived reality for us.

[haveyourselfamerry]

*is lived

[toffee1000]

Ok, I admit, I'm not a parent. But I have suspected for a while that I am somewhere on the spectrum. I was 'assessed' at 16 by a clinical psychologist and found to have some Asperger traits (this was before DSM V) but not enough to warrant a full diagnosis. I don't really have sensory issues for example- I hate the loudness and crowds in nightclubs for example but that's not necessarily just an Aspie problem. I can get quite over-emotional, crying easily if I feel attacked etc. The social issues are the biggest. Always hated eye contact unless with family members etc. I also have shit self-esteem and not a great self-image, not had any kind of romantic experience whatsoever (fuck sex, not even kissed!) I know I'm young with lots of time but I feel like I won't get any experience in the next few years even. I'm pretty sure I'm not asexual or anything, I can imagine having a DH and DC etc but then I can't IYSWIM, like sometimes I think "yeah I'll have a lovely DH and adorable DC" but other times it's "yeah but when is that gonna happen?"
Obviously the 'assessment' when I was 16 wasn't done by an autism specialist or anything. I'm quite tempted by one just to get an answer so that future employers (uni student currently) can know how to help me- but then I think, what if I don't get a solid diagnosis just PDD-NOS? I feel like I am different enough that I'm NOT neurotypical, but because I don't tick many/any sensory issues boxes I may not get a diagnosis.
For reference, I know it's not a separate diagnosis anymore, but I'd be more the Aspergers end of autism as that's what was flagged in the past.
Apologies for long post!