Late Autism Diagnosis and Parental Relationships

[@dlesliejones]

I grew up in the 50's and 60's and there was no "autism awareness". I only self assessed over the last 3-4 years using the approach of proving I'm not autistic, which only proved (to me) that I am. Since I don't have a spare $2,000 - $4,000 for a formal assessment. For my parents to have acknowledged that I was "different", was tantamount to saying the family bloodline was tainted. So instead they were apprehensive, waiting for my next inevitable meltdown or crisis. Isolating me like a contagion, intervening and insulating me from the world. Explaining away my quirks and traits, and faintly praising my preturnatural mechanical understanding and ability. Hoping I'd grow out of "IT". Fearing how it would reflect on our family. Until I turned 18 and could be sent off to university. I lasted a month. There was nothing wrong with me, but yet they knew. I just needed to "stop it", which was the response I got when I asked for help. In all fairness there was no help, only stigma. When I became a parent after a decade of self destruction and then years of pulling myself "up by my bootstraps", it was a pretty low bar as far as what constituted being a loving parent. I've stumbled and dragged myself through adulthood, and our children suffered because of my inability to maintain employment and because we were complicated parents. Not for lack of love, but for having two autistic parents who didn't know or understand how it was manifesting in their lives. We had both been vulnerable and deeply traumatized children, who grew into adults who masked how bewildered they were. By comparison, we had been better parents than our own, but still fell short. I forgave my parents when I realized how their lives and circumstances had shaped them. I'm challenged to forgive my late wife's parents for what she had endured at their hand. Not surprisingly the latest additions to our family have been diagnosed ASD as children. For my adult children, I am still parenting. With perhaps more understanding and kindness borne of my newfound self awareness. I can't turn back the hands of time no matter how fervently I wish. But I can try to be a steadfast father now... always and forever. Edit for spelling/syntax

[@ljm2607]

picture this: born in china. adopted into a single-mother household… adopted to financial privilege. but then there’s the part where my moms got Massive white savior complex… and the way to show gratitude is by completing chores and ‘taking initiative’ and being productive. she’s not an all around bad person at All, and i Swear im grateful to have the privileges i do (compared to my life in china, as i’m constantly reminded..). but as neurodivergent gay female….. yknow, it do Be a funky kind of way she doesn’t know really anything about me, and i honestly don’t mind

[@shadowfox933]

My parents were actually well aware of most of my autistic traits and mannerisms, and my mom showed no surprise at all when I told her that I had learned I'm autistic (at 21yo). They did everything in their power to avoid having me diagnosed as a child (in which they succeeded) due to the stigma autism carried where I grew up. It's still pretty bad now, but nothing like what it was 20 years ago. My cousin was diagnosed shortly after I was born, and the school system did everything they could to keep him away from the other kids. He wasn't violent or anything; they just saw autism as a mental deficiency for no apparent reason

[@brylaw]

This is such an interesting topic, and you're right, I don't think I've seen others talking about it! I was officially diagnosed at 26 after a few years of my own research leading me to the conclusion that I'm autistic. I did struggle a lot with those feelings of resentment because it's so obvious to me in retrospect, but as they say, hindsight is 20/20, and they weren't as educated about autism then. My mom's initial reaction was SO resistant to the possibility - she couldn't see it because I'm "smart." I shared a lot of research and information, and she eventually came around to understanding, but not without a fair bit of tension. In the case of my family, I definitely think there are a lot of older folks that are in denial about their own neurodivergence. While I don't have any siblings, I did point out to my mom that each of her sisters have at least one neurodivergent kid - the autism is strong in our gene pool! I definitely feel fortunate that I navigated the diagnosis process after already having to do a lot of work around boundaries with my family. I've lived over 1000 miles away from them since I was 19, and the relationships became very strained for a few years after I came out and started living a very publicly queer life. Had I been living with or near my family at the time I got diagnosed, I'm sure it would have been more dramatic.

[@apollo4216]

I was diagnosed with ADHD when I was about 6 years old based a recommendation for an evaluation from a teacher. The ADHD diagnosis never really sat right with me. I felt like it didn't adequately explain my behavior. I wasn't blurting out in class because I couldn't help myself; I was doing it because I didn't understand the social rules which determined whether that was acceptable in a given situation. It wasn't until I was 19 when I got an autism diagnosis that I finally felt like I had something that truly fit my experience. Looking back on it now (with the benefit of hindsight), the signs were so obvious. Speech delays, abnormal emotional reactions to situations, dislike of certain clothing textures and loud sounds, preferring to play alone, lacking eye contact and gestures when speaking, tendency to monologue about special interests, dislike of small talk and unfamiliar social situations in general. It was all there plain as day. I don't fault my parents for missing it though. My childhood was relatively uneventful, so I could see why they wouldn't pursue finding a "medical cause" of these differences. I know they weren't being neglectful or malicious. Even if they had knowledge of autism (and they didn't), it can still be easy to miss. Prof Tony Attwood, a psychologist who studies autism in children, failed to notice that his own son was autistic. Even if my parents had figured it out, I'm not convinced it would have been a net positive for me. It could have easily led them to seek treatment for me that would have ultimately been damaging to my mental health, or to isolate me away from other students which would have prevented me from learning how to interact with neurotypicals. The career I have now was a direct result of the special interest I've had since childhood. In those formative years, it would have been easy for them to accidentally crush my burgeoning special interest trying to make me more "well-rounded".

[@buttercxpdraws8101]

Great topic 👍🏻 I’m very confused by my parents reaction. They accept it but don’t really seem to know what it is and how my behaviour reflects it. I still mask very, very heavily around my parents. If I don’t have the energy to mask I just don’t see them. It’s really sad. I’m so lonely. 😔

[@smicketysmoo]

[@annestone5940]

Normal people fight introspection. It means they have to assess and take responsibility. You are awesome in that you are willing to grow Go ahead and grow. Don't expect others to approve and help you. Growing, taking responsibility is scary for some and you will meet opposition. Get grounded.

[@shearerslegs]

To give my Mam her due she did notice I was different as a child and she took me to the village GP when I was very young and she was told she was an over fussy first time mother. I also remember being taken when I was a bit older and the doctor thinking I was deaf, they already knew I had an eye condition so when told I had high frequency deafness they believed me to be a degree of deaf and having an eye condition and explained things away with that. I then developed depression and anxiety like so many of us seem to suffer and consequently my Mam was looking after me and I was unsuccessful with education and ended up in an unsuitable job at McDonalds, I ended up having a breakdown and my Mam cared for me for years. You’re probably noticing the lack of my Dad in that story, he was absolutely neurodivergent in some way and he had no idea how much Mam did to look after him. We had a very poor relationship and while I loved my Dad if I am honest my Dad didn’t like me. I was the failure. I have worked with my therapist and he suggested that perhaps my Dad struggled to express his love the same way I sometimes do but I look at his relationship with my other sisters and I don’t really believe that to be the truth but it’s possible. When we found out I was properly visually impaired it was like the final piece of a jigsaw for my family, they understood me, well Dad didn’t, but Mam and my sisters did. I accepted it too, I knew nothing about autism then and I self diagnosed much later around thirty and got an official diagnosis about a year later. From what Mam says I unmasked suddenly and it took a while to get to used to the new me but then she had the realisation that she had never known the real me before and that made it easier. I found getting my family to learn about autism was impossible though and all they know is through what I have told them. I sometimes feel like they are trying to drive me to a meltdown, I know they’re not really because they react very badly to them. The last meltdown I had was when I was going through a difficult spell with my mental health and I phoned my Mam for support and I didn’t feel like I was getting it and had a meltdown and swore at her which I would only do having a meltdown because I don’t swear much and I wouldn’t dare swear at or around my Mam. Anyway she hung up on me even though she knew I was ill and suffering at that time. The next day when I was calmer I tried to talk about feeling abandoned but my Mam wanted to go past it without discussing it. I’m also unable to get them to understand that if they yell at me during a meltdown even if it’s because I am yelling it causes me physical pain and that they need to be the calm ones at that time. I think they still think it’s a temper tantrum and not sensory overload even though they have had a doctor tell them it’s sensory overload. Thankfully I live alone(ish) now and I have only had that one meltdown over the phone since I left home. I’m incredibly lucky to have got a flat in supported living flats so I have people who will help me if I need them but I’m able to be alone when I’m wanting to be. My social worker was a great advocate for me when it came to getting funding, sadly she passed away young. Anyway I’m aware that I am rambling. My situation with my family is that we lost Dad to heart disease so there’s Mam and my two sisters and one of my sisters actually tries to learn things about autism but lives far away from home and fuel at the moment is obviously expensive. My Mam is elderly and disabled and my other sister cares for us both. I still feel they’ve made no effort to learn about autism, they say they have trouble understanding the books but I have a wide range of books they could try and they’ve had over a decade to try and learn, I am loved yet misunderstood often which frustrates me but it’s also what I accept. I’m sorry if I have overshared again, this is a subject that I have really complicated feelings about, I get angry sometimes and sad other times but I can’t force people to learn what they don’t want to learn. I love my family a lot and I get more acceptance than many people do but I would be lying if I said I didn’t wish for more. Thanks Dana for being willing to bring up difficult subjects and sharing some of your life. Sorry this is not a coherent piece of writing I know it’s not right but if I go through it I’m not sure I won’t just delete it.

[@shearerslegs]

@@artemisXsidecross thanks artemis, Dana covers some tough topics and I find it hard to criticise my family because they do their best for me in so many ways but in other ways I feel like they could help me a bit more. I’m sorry we don’t all get the support we need from our families, we should all be loved exactly as we are and never need to mask at all. I hope that if I could see into the future that would be what I see for many more people. Also people getting their diagnosis younger. I’m glad my family were willing to be involved with my diagnosis because at least I know they accept it’s a real diagnosis. I have huge admiration for anyone that gets through that much questioning alone. I hope you have a great day.

[@TheINFP_Diary]

I scheduled my first evaluation appointment, yet all the family members i've told its a possibility im on the spectrum, they all still say " you're just being you, you've always been that way." ~me thinking "that's the point."

[@smicketysmoo]

Thank you for a great (much needed) topic and for being brave enough to share your experiences. This seems to be a common issue amongst the later (for myriad reasons- whether female, person of colour, trans, working class, older, etc.) diagnosed (self or professionally) ND community. It seems that parents definitely do not wish to confront their own differences, let alone their "child's" when presented with the facts. In danger of oversharing (such a common trait amongst the ND community) - I was diagnosed (in the early 80's) with ADD (a redundant diagnosis now - more like "inattentive" ADHD today). A diagnosis that - for them at the time - meant I was one of those "badly behaved/ sugar intolerant" children that they had read about in the UK press of the time. At that time they did not wish to get me help/therapy/medication due to the negatives that they believed it would inflict upon them. Recently went through formal diagnosis (at 52) for ASD and cPTSD as well as ADHD and had to have my parents' involvement in the process. My parents have long since divorced and have separate lives on different continents from each other with new partners. Obviously elderly, my parents when given the forms to document/question my early life - balked at filling them out, both claiming memory issues (which are true - tbf). They barely managed 6-10 of the umpteen questions on the form - and those were just the confirmatory ones - I had been born at least! Luckily, for me, my dx did not rely on their answers, but on the professional observations of my assessors and I got formal dx for issues that had been plaguing me since birth. But, even though they had "filled out" their questionnaires, my parents have yet to ask whether I got my dx - and this was all several months ago! So, really relate to this topic (haven't even scratched the surface of my own thoughts and experiences on this). Hadn't commented before but this one made me feel I should. You are not alone. Thankyou again - for also creating this community. I am still processing my own experience and issues with this topic, but other input and comments has really helped.

[@smicketysmoo]

@@artemisXsidecross ill winds? More like squalls, gales and hurricanes. Being in the bottom drawer was never an option for my (admittedly undxd ND) parents, they preferred ABA of their own design - and then abandonment when that didn't work. I did (naively) think that getting dx might "help" our relationships - something I do want as they are not getting younger - but realise that this was never an option. That their admittance that I had a dx for lifelong issues would also somehow lead to introspection in themselves - a foolish thought on my part. This also seems to be a common issue amongst the later dxd.

[@smicketysmoo]

@@artemisXsidecross That got quite literary very fast! Does that say something about you or your perception of us? Personally, "Shantih, shantih, shantih" - to your observations, we quite agree and accept them (well, some of us do), but some were looking for a more personal interaction; a way to make us feel better about our shared issues/experiences, but we accept/understand/incorporate the words given and thank you.

[@smicketysmoo]

@@artemisXsidecross I apologise if I came across interrogatory or accusatory, it was not my intention - but is a common story of my life! The Sanskrit blessing was meant to signal my full acceptance of your words and quotes in a way I thought might appeal. I am sorry that I did not clearly express the enjoyment of ideas that your contribution engendered - and the subsequent research rabbit hole that I happily descended into. Thank you again. 😊🤓

[@smicketysmoo]

@@artemisXsidecross Thank you for your words, all of them. They mean a great deal. Only recently attempted the terrifying ocean of social media and comments, so still navigating its hazards. The Wasteland in itself is actually an interest of mine but not so much Eliot's other works. (I am one of those philistine autists that the UK educational system did little to ameliorate or recognise for that matter). 😊 For me, poetry has always been a puzzle to be solved - but I do like puzzles.

[@ryn2844]

Getting a diagnosis actually helped a lot for me. They didn't believe me before that, but if a professional says it's true, then they'll believe it. My sister got a diagnosis too now. My brother, well we all know that if I'm aut!stic, he definitely is, and we don't need a diagnosis to prove it. My dad now thinks it's come from him (and he's probably right I mean you don't have three aut!stic kids randomly). My mom did a lot of research on her own and tries to be more understanding and accomodating. Idk just good things all around tbh.

[@emmam8829]

I fall in the category of not telling them because they would first have to accept that they're the same which I don't see going very well. Maybe one day. Do you find telling people in your life to be productive? I do believe it's productive for society, but so far has not been helpful on a personal level.

[@FirstmaninRome]

Same here, it's not been helpful to disclose. Nt don't have enough interest, intellectual curiosity or care to try and understand, it would just give them a false impression from there place of ignorance. Did tell my dad in a long Ted talk, but he is an odd autistic engineer, scientology doesn't believe in psychology. Qanon now. My mother has an ocd manchousen thing but is intellectual limited as well. Really both my parents are type 2 autism cases. I think im rare example of type 1 in the working class, I think 90 percent are inthe professional class, born there.

[@emilyg6193]

hugs for your horrible day