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.

[CloudPerson]

Being diagnosed was very important to me and has changed how I see myself.
Being autistic in itself is othering, when you try but fail to fit in and cannot understand why, because you're copying others who effortlessly make and keep friends, when you are told repeatedly that everyone struggles with things but you just need to try harder like they do, but you still find yourself falling to bits and needing more and more time to recover from everyday events, like school pickup.
Knowing there's a reason is liberating, all the years that you see yourself as some useless poor excuse of a person, someone who doesn't make enough effort, even though you're struggling to keep up with everything and constantly working hard to be normal.

The main problems with being autistic is others' attitudes (that ASD makes you a lesser person, that they think you're being attention seeking, that they still think you just need to make more effort, that a diagnosis is a negative, limiting thing) and living in a world that is geared up for NTs which means that by default autistic people have to make far more compromises and build in so many strategies to do normal tasks, and that's exhausting.

[PlayOnWurtz]

I think for people like me it will explain why I'm so isolated and why I can't maintain relationships. It will also explain why social gatherings are exhausting. Why they "hurt" why I'm so sensitive to noise. It may also help me to stop feeling like such a failure and like such a crap person because there's a reason why people don't like me

[SortAllTheThings]

Oh Play. I could have written your post.

[mirokarikovo]

Aroseforemily and others have said in this thread thinks like I can't see the point in getting an official diagnosis.

Someone very wise on a thread about adult diagnosis a few weeks ago pointed out that there could well be a huge need for a diagnosis in later life and this us why I am going to ask to be referred for a proper assessment.

in your mature-but-still-youngish adult years, if you are high-functioning ASD, you probably have life ordered in a way such that you can cope with everything and there is no particular need for a diagnosis.

Wind forward 20 years or more. Perhaps failing health, additional medical needs. Perhaps even needing hospitalisation or residential care at some point. So what happens when you don't have the energy to invest in your high-functioning "front" because you are too ill. What happens when you want to ask for reasonable adjustments to your care plan or environment that will help you cope. With no diagnosis you are just being stroppy and difficult. Time and energy invested into getting a diagnosis now could be vital at some point in the future.

[SortAllTheThings]

I saw that post too.


Some of the best advice I've ever seen on mn and another boost to seek a diagnosis

[JeffVaderneedsatray]

I have 2 DC with ASCs. My dad is absolutely an undxed Aspie ( and he himself has said how like our DS he was as a child and that learning about DS has helped him understand his childhood a bit more). DH has many many traits and is most likely an undxed Aspie.
For years I assumed all our DCs traits came from him until DD was dxed with ASC and ADHD and suddenly lightbulbs went off all over the shop. I score incredibly highly on the AQ. I am a quirky soul but I was raised by a pair of musicians who then split up and my SD was much older than my mum and very 'victorian' in his outlook (My stepsisters were in their 40s when I was 15) which I always felt explained why I seem to march to a different tune to the rest of the world.
I have never sought a dx because I cope. Some days, like today, I struggle but mostly I cope. Today I am still up because I have had enough of people and I just need to be alone for a bit! My brain needs peace.
I have massive sensory issues, largely noise based and soem days life exhausts me!
I was a teacher. When I started teaching classrooms were generally quiet places (am 49) but as educational practices changed and group work became the norm I found a day teaching left me tired to the point of tears and I wasn't capable of being a teacher either physically or mentally. I'm a SAHM now which has benefited us all, especially our 2 DCs.
Given the genetic link and the lack of understanding of how ASCs present so differently in girls I'm not suprsied there are many more women who have struggled for years and gone undiagnosed.

[HerodZackHunt]

I'm 46 and in the diagnostic process. First psychologist is sure I have it. My dd has it. I score 45 on the test and that was me trying hard not to be autistic. DH did the test for me and it was higher.

[HerodZackHunt]

Today I am still up because I have had enough of people and I just need to be alone for a bit! My brain needs peace.
Yes.

[ShelaghTurner]

Yes here too.

[RichardBucket]

For years I've had a sneaking suspicion that my mum has ASD or something similar. Never mentioned it and never will unless she raises it, which I think is very unlikely.

[FaithFromTheRealmsOfGlory]

to everyone recovering from interaction with lots of people. I had to go and hide yesterday. Too many people and noise, it got a bit much.

There is a support thread for neurodiverse MNetters (diagnosed or not) over here in MNetters with SN I've found it an invaluable source of support and information.

[Manumission]

Yes and at least half of us are on MN

It makes perfect sense really doesn't it? As a phenomenon?

[Manumission]

flowers brew to everyone recovering from interaction with lots of people. I had to go and hide yesterday. Too many people and noise, it got a bit much.



Can I propose a toast to the invention of the internet? It really did change everything for the interaction-saturated (and those at home with them)

[ShelaghTurner]

In all seriousness the internet has utterly changed my life. Social media was made for me. I have more friends than I've ever had in my life and I can take part in things without being overwhelmed or self conscious. Without it I really would have shrunk my world to the house and the school run.

[ShelaghTurner]

🍷

[ArgyMargy]

Sorry but being an introvert does not make you autistic. I wish people would stop trivialising and self-diagnosing. It does no favours at all to those with real problems. And diagnosing others is disgraceful behaviour unless you are a trained professional.

[FaithFromTheRealmsOfGlory]

I get your point Argy, but given that so few women are being picked up, if they don't self-refer because of their own suspicions, surely there wouldn't be this increase in women being diagnosed?! People saying things like that are part of the reason women don't pursue diagnosis!

As I said up thread, I was one who read about ASD in women (via MN as it happens), suddenly realised I might be, got referred and assessed via GP. If I hadn't, I'd still be undiagnosed. I've had lots of input over the years from MH professionals but ASD was never mentioned. Now that I do have a diagnosis, my MH has significantly improved because I know why I am as I am!

Not all introverts have ASD, however pretty much all of us with ASD need recovery time after spending intense time socialising.

[ShelaghTurner]

Argy and you have no idea what other things are going on. This is one conversation out of a lifetime of experiences. So unless you know everything about everyone on this thread then please wind your neck in. You aren't the spokesperson for all things ASD.

[Manumission]

Argy what? That's a lot of assumptions.

[SVJAA]

It wasn't until DS1 was diagnosed and I did my research that so many things from my childhood made sense.

[misdee]

My teenager daughter has just been diagnosed at 14 years old. I asked for her to be assessed at 3 but they said she wasn't autistic. I knew she was and we adjusted family life for her and carried on. When she hits secondary school she fell apart so we asked again for assessment. After 2 years on the waiting list, she finally received a diagnosis. It's more about her understanding herself and why she is different to her peers. She often asks ' do I do xyz or think xyz because I'm autistic?' Sometimes it is, sometimes it's not.

I have wondered if I would get a diagnosis as often struggle but for me, right now, is not a time to be chasing a diagnosis (currently having a lot going on with the youngest who has a brain issue and under gosh for investigation).
I follow a few women with autism on Facebook and read the articles that pop up. Mainly to understand more about dd2 and female autism but do find a lot applies to me as well.

[SerialReJoiner]

I'm probably on the spectrum, as is DD. My Ds was diagnosed at age 5. I understand being wary of self diagnosis, but when I apply parenting practices to my DD that take into account her possible ASD, our home life goes much smoother. So it's not hurting anything, obviously. I'm easier on myself, too, and can accept my quirks and needs instead of thinking something is wrong with me. Nothing is wrong.

[Oblomov16]

Someone I know and respected suggested I was autistic. I don't think I am. I was extremely upset by it.
But I know I do have many qualities. But not enough to get a diagnosis. I'm sure if that, because I know how hard it was for ds1, plus it's harder now, plus even harder for adults.

Like a pp, it amazes me that people can't see that I'm a nice person inside. I value that quality in others highly, and can't quite understand how others don't see that in me. It puzzles me.
I have a very very high moral integrity. I can be abrasive, but I often do it on purpose. I want people to know my true feelings. I can also be very diplomatic. If I choose to be.

I am quite well read, because if ds1, on autism. I doubt getting a diagnosis would benefit me.

The school accused me of Fii. It took weeks for us to get the boys back. In the end, It was suggested to me that I have been systematically bullied by the school for years. Social services concluded that the school had victimised me.
I now trust no HCP. I will never get over it. I have been damaged. I have gone over and over my behaviour endlessly, to try and learn. I still do.
They see me as difficult. Ok, so I'm difficult. But I still know I am powerless. When the system turns on you, there's nothing you can do.
Sally Clarke felt the same. As a solicitor she hoped the law would save her. It didn't. Sir Roy Meadows? Fii. What a crock, but Tony Blair ran with it? I have read into this. A lot.
Ds1, admittedly is who he is because of me partly.
I am currently reading 'Let's talk about Kevin' and enjoying it.

[JeepersMcoy]

I just found this interesting article about autism and empathy.

spectrumnews.org/opinion/viewpoint/people-with-autism-can-read-emotions-feel-empathy/