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.

[KickAssAngel]

I also wonder about the doctor who first wrote about 'refrigerator mothers'. How can a doctor sit there and describe a typical trait in the mothers, and NOT see that they are quite likely suffering from the same disability as their children? That failure in logic still baffles me.

[CloudPerson]

Yes they could, but they cover many autistic behaviours which, as part of a bigger picture could mean that the person is actually autistic.

How many undiagnosed children are seen as naughty and violent at school? Or manipulative? Or are too rough with their peers? Or are called weirdo? None of these are definitions of autism, but it's the behaviour that is noticed (when the person is struggling) that mean their needs are hopefully flagged up. Behaviour is the first thing that people see, but people are very very keen to dismiss behaviour (that is difficult for the person themselves to manage) as "well we all do that", when of course everyone does certain behaviour at certain times, because we're all human, it's how much of an affect that it has on the person, and how much it stops them living a fulfilling life.

[G1raffePicnic]

Wow I scored highly in the adhd one and "autism traits". I think my dad and brother might be on the spectrum and always assumed I wasn't as I thought I was over invested in emotions and had theory of mind. I'm super bright but struggle it every day life. And am constantly exhausted. (Have prosopagnosia and misophonia which I was aware sometimes overlap.)

[PlayOnWurtz]

Another one here who strongly suspects being autistic. Despite being a person who people seem to be drawn to maintaining friendships and picking up on social cues completely escapes me. I struggle with small talk. Large crowds and noises 'hurt' for want of a better way of putting it.

I have severe mental health issues requiring treatment from psychiatrists and cpn's and really struggle with being a mum. Being empathetic towards my dc doesn't come easy when they're poorly. I will do the practical stuff but it's rabbit in a headlights about the rest.

I feel like either I missed a development stage because I was bullied and so didn't learn how to interact with people or I was bullied because I couldn't interact with people iyswim chicken and egg.

[blackheartsgirl]

I was diagnosed earlier this month with asd and adhd.

I have NEVER fitted in. Not ever. Never at school, college, university, or as an adult.Always on the outside looking in. I was always the weird one, the one with the attitude and temper and trouble speaking. I did have some friends but we struggled with each other and we fell out a lot. I was horrendously bullied until I left school. I've got a 2:2 but I've never used it, I had my son just after finishing uni and he was diagnosed with adhd then autism later on. Had 4 more dc and drifted doing shop and cleaning jobs because I couldn't cope with the complexities of other jobs. I have meltdowns and self harm and struggle so much.

For years I was put down as a hyperchondriac with anxiety, depression and went back and too to the doctors for years until I had a new doctor who said this is has gone on long enough and referred me to a psychiatrist. I took along my old school reports and my parents school reports who have the same troubles as me. My psych was lovely, and very sympathetic and finally gave me my diagnoses.

I wish I'd never told work, I get treated like an idiot and my supervisor gets impatient with me and my kids and partner think I'm making it up. I hate it.

The worst thing is my dd1 who is 14 us struggling the same as I did, she has no friends, she doesn't go out, she struggles to look people in the face unless it's me or her dad and stepdad or siblings, her tablet and headphones are her way of blocking out the world, they go everywhere with her and she struggles hugely with school. She's awaiting camhs but I'm not holding out much hope for them, they did my son no favours.

Autism was definitely around when we were younger, I knew a few people who were labelled as odd or quirky and we're terribly bullied as a result.

[AbiBranning]

I regularly get called up on being too honest, but am not worried about a diagnosis for me, but would dread DS going through the same.

[PlayOnWurtz]

So I got 40 out of 50 on the aq test... so perhaps the ocd and anxiety diagnosis is in fact something else

[RubyWinterstorm]

Why is the autism "label" important to you?

Iunderstand it helps children who are younger, as their home and school life can be adapted to accommodate them,

But isn't autism a spectrum? It's rarely a black and white diagnosis?

Sometimes I fear it leads to people being "othered"

What would there be gained from a diagnosis?

Just wondering as people used to ask/say about one of my DS ("he is clearly on the spectrum", that sort of comment)

[BubbleFairy]

Another diagnosed this year, aspergers, and I'm mid thirties. My own son was diagnosed four years ago. Has been a long road, but I'm pleased I went through it.

[BubbleFairy]

Playon I have anxiety and ocd diagnoses alongside my aspergers.

[PlayOnWurtz]

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

[BubbleFairy]

Playon, mine is like being constantly in a near miss car crash, the tingles. And I'm physically exhausted afterwards.

[PlayOnWurtz]

For me i think it would greatly affect my mental health treatment and also mean I can get better support with my job (which involves working with the public)

[BubbleFairy]

My diagnosis has certainly helped me at work. I don't have any regrets.

[PlayOnWurtz]

That's the one bubbles it's like being plugged into a charger and having static that you're draining the charge with each situation that causes the static

[HarryPottersMagicWand]

I've recently seen a clinical psychologist and she agreed I should pursue a diagnosis but inhave to go through thr NHS as I can't afford private (would be about 1k). I'll have a report from her to back me up and she is going to contact my GP and local autism service for me. I score 40 on the AQ test and so much of this all makes sense. I am blunt but don't mean to be rude, social rules baffle me and I often just feel awkward or try and copy what others would do, I have suffered with anxiety all my life and depression on and off since teens. I also have sensory issues, food, smells, hate being touched unless it's on my terms etc etc.

The lack of empathy thing is apparently a myth btw. I thought I had empathy and a lot of it but I did an online test via an autism test website and my score was shockingly low!

[SortAllTheThings]

Does anybody have any experience of how to seek a diagnosis? After another scoff at the idea of me being an aspie I'm determined to get a definitive answer this year. I've been meaning to for 4 years.

[ShelaghTurner]

A diagnosis at 45 would help me understand myself and forgive myself for struggling so much with the world. It would give me a reason why I am like I am. That is priceless to me. I've always assumed I was my fault, if that makes sense.

[BubbleFairy]

Sort, I went to my GP. He said there wasn't funding, I had to go to a panel (my personally, but my case) for funding. I had to write a supporting statement, and my GP sent that (which included why I thought I had it and why the diagnosis would make a difference to me at this stage in my life) alongside medical and family history. This went to the panel, and I was approved. I then got referred to London Maudsley for a day clinic, and was diagnosed there. Took about 10 months I think in all?

[BubbleFairy]

Shelagh, I actually do feel I struggle less now, as I know why I struggle, and that it's ok to say no to things.

[SortAllTheThings]

Thank you BubbleFairy. I'm scared to go to my GP and just get fobbed off. It happens a lot. I'm always right in the long run, but initial appointment is always very disbelieving.

[FaithFromTheRealmsOfGlory]

Sort I went to my GP who said Well I don't think you are but if you want me to I'll refer you. I had an assessment (long wait!) and got a confirmed diagnosis. I had a DISCO assessment but it varies in different areas.

[SortAllTheThings]

I know I am. I really just know, I just need the DX. I'm sick of people not believing me.

[SortAllTheThings]

What's a DISCO Assessment?