Lived Experience Forum

[Appleblossom]

Hi @MoonGal I think i have mentioned before that I self identify as an aspie.  I have a girlfriend who works in disability who had an adult diagnosis and is glad that she has.

As for myself, I have signed up to receive the AMAZE newsletter.  They faciliate adult diagnoses .. eg have a list of professionals.  Maybe I will get around to it ... today for the first time I was put on a health care plan ... it has taken long enough to get to this stage where I dont have to pay out huge amounts for Osteo and Physio.

I am not in a hurry ... as like you .. I am still me ... with or without labels. .. and I have a tendency to try and find out what is wrong with me ... as I feel like such a reject.

I have gone through a lot of who -ha about it when my son was diagnosed with aspergers about 10 years ago.  Did a lot of research.

it is not an intellectual disability @Peter_Pan78 it is seen more as a developmental disorder ... ie it usually becomes evident during childhood or adolescence.

Yes @MoonGal I think we are touching on a delicate area .. back to my SPECTRUM idea ... not just the childhood autism ratio spectrum (CARS) ... but spectrums of all behaviours, traits and what is deemed normal or pathological.

I also have little alarm bell dings ... as some of the issues of women and aspergers may relate to gender roles and perceptions of social appropriateness ... and how that has changed over time ... eg not that long ago in the history of the human race ... women werent seen as able to cope with math or science ... and now they are ... without being thought of as a show off or little professor, 

I have settled for being a nutty Nancy and a batty Betty but no-one wants to take responsibility for locking me up ..

[Peter_Pan78]

@Appleblossom Are you referring to Asberger's as not being an intellectual disability? Developmental is a word often used at the disability services provider I work for, but as I know very little about Asbergers I will go with u on that one as you seem to know more 😉

[Appleblossom]

Its really complex .. and they do an in depth language use assessment .. including language pragmatics ... yet if the psychiatrist that signed off on my son's diagnosis could see him deal with the range of people as he does now ... he would eat his hat ..  I am seeing my son's social skills sky rocket .. as we are relating to people and know we are on solid ground.

I am so nerdy ... and yes I do my research .. especially if a child's health is involved. 

[GothMum]

Hi @MoonGal. Yep, yep yep.

first diagnosed and treated for serious depression at 4 years old... Range of "psychosomatic" illnesses and self harming during primary school, some OCD like traits, ongoing 'odd' behaviours throughout childhood, (an abusive mother who had untreated bipolar disorder and a narcissistic? Or borderline? personality disorder and an ineffective father), difficulty making and sustaining friendships, extremely high IQ but difficulty making decisions and tendency to avoid 'risk' (by which I mean always accepting the most straightforward option because of fear, but then turning that option into a major nightmare), overly unsuccessful life. Plus chronic pain, chronic fatigue which self replicate all the already hard stuff.... Several unsuccessful suicide attempts, constant suicidal thoughts, feeling that my life is crap and I'm somehow not managing to make anything of my life chances (despite people's comments about me being an exceptional mother...)

diagnosed with autism (Asperger type/ high functioning) in early 40s; as result of diagnoses of my 3 kids.

all i'm good for is ensuring my kids have a significantly better life than I've had. I won't allow my sons or even more so my daughter to be treated like a piece of shirt. I refuse to make them undertake extra curricular activities to try to enforce social connectedness. None of my children have friends. But at least they don't have to do activities with groups of other kids who don't like them, or actively bully them. It kills me that I have produced children who's lives might be like mine. I'm trying hard to ensure that their experiences are significantly better than mine. That their lives are pleasant. Mine isn't. I'm either falling asleep all the time because of the medication to control my pain, nauseous because of the medication to control my mood, in too much pain because I can't bear another week of sleep so I reduce my pain meds.

i have begun thinking that if I'd been properly diagnosed as a kid, perhaps some of the shirt from 49.5 years might have been avoided. I dropped out of my (almost completed in sociology/disability) Ph.D. not long after my first baby's birth. He was a "difficult" baby; extremely high needs and I developed postnatal depression (ironically he was born during one of my very few periods of low depression and reasonable self esteem). When I saw signs of autism, I was repeatedly told that I was seeing things that weren't there;that I was too sensitive to autistic signs due to my academic profile.... I wasn't. Two more babes, neither planned nor unwanted, and then the beginning of my marriage breakdown.

in 1970, except in severe cases or examples of non pathological muteness, autism was rarely diagnosed amongst girls. And Asperger type autism only happened to boys.... We girls show our autism in many ways, many of them different to the boys. It's easier for girls to 'disguise' social awkwardness; I actually doubt any of us disguise it. People just don't see it. Our social inabilities are hiding in plain view. Let me explain via a vignette I observed the other day at my daughter's school.

Miss 9 is going through some significant school refusal atm. In order to avoid disrupting her learning, for the first few days of school this year (after over a week of total refusals with self harming) she attended only from 9am till morning recess. On the second day of recess collection I go into the school to collect her, and teacher tells me she's outside, "playing chasey with other children". Really? My daughter hates chasey, it's a family trait...  So, teacher and I move out to the school yard to observe miss, "playing happily". Obvious immediately to me, she was not playing with other children, nor was she happy. She was running from one tree to another, hugging the tree, then running to the next, for a hug. There was no interaction between her and the other children; they were oblivious to her. She was getting her fix of 'human companionship' by hugging the trees... even when I decoded this for (a very experienced teacher) the teacher was still unable to see what was directly before her.

my daughter has graduated to staying at school until lunch time. Lunch time is the most significantly frightening part of the day for someone who has no friends, especially when that person knows they don't understand the rules of the playground. Even those children she was friends with earlier in her education don't play with her any more. She is still developmentally playing alongside others, rather than taking part in the unfathomable fluidity of grade 4 complexity in games. Either she walks with the duty teacher (as her brothers both did at the same developmental stage, she plays with the prep and first grade children, or she tries to look like she's happy playing alone. It is heart breaking.

each of my children has a best friend; but not a human one. Two of three have bonded with dogs, and all 3 call their iPads their best friends. I've always relied on animals. And goth rock.

aspergers/ autism with self reflection and awareness (which is really what Aspergers is) is a totally shirtful lonely experience. We are seen as weird. We do often cultivate that weirdness because it's one of the easy things for us, and weirdness hides a lot of personality 'defects'. We know people see us as odd or worse, we know we are deficient in social behaviours, but by and large, we don't know how to become ordinary...  We often flock to the fringes, because there is more acceptance there.  For those who can't imagine life as an Asperger type autistic person, here's an example; you go out dancing with a paid worker, because otherwise you either go alone or you stay at home. The paid worker easily meets and converses with people at the club, gets chatted up, even though it's not their scene and they are "working" to support pathetic weirdo who has no friends. Asperwoman or asperman dances to fave music (alone) cannot sustain conversations, cannot begin conversations either. Asperperson is on high because of the music, but week in week out, still no friends, but heaps of crap from associates because "at your age" you behave unusually, still... You still play alongside others, still can't follow the fluidity of people's games (even though afterwards when you dissect what happened retrospect helps you uncover the missing cues, you can't locate them next time it happens...)

anyway, I'm in a shirt place atm. I'm noticing my moods are cyclic, and my headspace conversations change with the cycle. I'm requesting  assessment for possible bipolar disorder. It could answer some more questions, but actually I think that a predisposition to depression, bipolar, low self esteem, social isolation, etc, etc, might all actually be the true story of Aspergers/autism. And I so dearly hope that by actively giving my kids tools from a young age will help them avoid the intense negativity I have experienced. (I am also on a wash out between ceasing one antidepressant and beginning a new one which my medical team think might help me, so apologies for the negative tone...I try to at least appear 'positive' if only for my children's well being.)

and in this mega down cycle, I've rediscovered lovely, lovely dave grohl (nirvana, foo fighters). And I'm still loving frank turner.... Music is my thing  

[GothMum]

@Appleblossom, @Peter_Pan78

Autism in and of itself, is not an intellectual disability. It is 100% developmental. But, sometimes that development does touch on learning, sometimes personality, sometimes anxiety, sometimes attentiveness, sometimes behaviour... It can sometimes include physical development too. The full gamut of intellect is found amongst people with autism, and just like the neurotypical society, each person with autism is as individual, with shades of all sorts of similarities and differences... The difference is that our brains are wired differently, and the wiring means that the kinds of things our society views as normal, because of the way the majority neurotypical population is wired are at times at odds with the way our brains are wired.

i have lots of ideas about differences between auties and neurotyps, lots of theories about the genetic and evolutionary reasons for the differences, which one day I may expound upon in this community. I suspect it's actually about 234 PhDs worth! But, intellectual disability is not a factor in diagnosing autism spectrum disorders, just as intellectual 'superiority' is not. And 'rainman' type autism is not a valid source of understanding what is a complex and puzzling brain organisation difference.

[MoonGal]

@GothMum, OMG! Thank you, thank you Thank you. You just described my lived experience from four onward - your story and your daughter's story. I am about to log off, much to filter and percolate on here I would like to do your extensive and honest response justice. I appreciate the level of disclosure and I have identified so strongly I cried. s'okay though, they were good tears. More at a later date. Hope you surf the down wave, keep on listenin' to your music. I spent today with Vivaldi.

[Appleblossom]

Jeez  U2

Frank Turner and Vivaldi

it pays to have an open mind.

[GothMum]

@MoonGal

Pleasure. Glad it was helpful for you. I do get on my soap-free box and am passionate about getting autism, esp in reference to girls and women, in the open, discussed and demystified. And as anxiety and depression are almost always comorbid with autism, it is something that should be here. It was hard going writing that stuff , but I know that getting thoughtful input is really important in understanding this area.

(Vivaldi is amazing to listen to in the car when I have to get kids to a high stress appointment or activity...and stravinsky is helpful when chaos is ruling our home... As is going to the garage and bashing the drums! And my very favourite musician, a British dude named Porl King (Rosetta Stone/miserylab/in death it ends) struggles with a social anxiety disorder, which underlies much of his creative output.  Music is my 'thing', my saviour, my lifelong obsession)

[MoonGal]

I wonder, the weird childhood I had, when I mention to my (now elderly) Mum that I was 'different' to other kids she just looks baffled and says "I was a lovely little girl" and when I said i didn't have any friends, i was bullied at school, I spent my entire childhood hiding behind trees in the school playground... she looks baffled and says 'of course you had friends, you are looking at it all wrong" she says. So i don't talk to my Mum about it (anymore because she' old and frail and forgetful, so it is kinder to not even remind her). She wouldn't really know what I was like as a child anyway, because she worked full time, I came home from school every day to an abusive sibling and when Mum and dad got home from work they were so tired and taken up with the daily demands (as I now know having worked myself), Dad also had un-treated PTSD from the WWII anyways and was a wreck but did his very best for us all. I spent my entire childhood in utter abject fear and being not seen at all on any level. Whenever i have been to Psyches of various stripes - once I menton the Abuse Words - that becomes the party game for the duration, I have never had the opportunity to talk about what my childhood was really like, really, really like. I was so lonely, if i did hang out with other kids (from time to time) they were misfits (too) and/or living with disabilities. I am so unsure if an adult ASD diagnoses would be beneficial or not, I am just me, like I am - def. now bi polar etc etc... What's the point, except - except - I think maybe knowing this, makes sense of me in a way nothing else ever has.

Thanks for writing the hard stuff @GothMum, it really did help to identify and I am encouraged by your honesty and sorry too for your having lived it and living it with your kids in a world where we are 'other'. Always have been, can't see that changing any time soon. 

[Appleblossom]

@MoonGal   @GothMum   @CannonSalt  @Peter_Pan78 

Who was it that said "I read so I do not feel alone".

I find this thread rich and resonant.

While we need to have a sense of 'self' and 'other'  to stop over merging in close relationships ... I am feeling a greater sense of "WE" in the various posts of a lot of forumites.

Thank you all.