Autism, OCD, educating family, asking for accommodations

Scott

New member
Hi

I have experienced autism in ways that would result in me being labelled at different points on the arbitrary functioning levels scale.

When I was a child I was situationally mute and was unable to speak in any setting other than my home. I also was behind many development goals for my age - again these are arbitrary but involved things like tying shoelaces, buttoning my shirt, demonstrating use of a typical gait (I walked on my toes.)

Now people call me “high functioning” because I can monologue about special interests, research those interests and end up learning a lot about the things I care about, engage in discussion on a topic if we all are using text communication, have one on one chats with friends. But I still find reciprocity challenging - and group conversations are an impossibility for me. My auditory processing issues make it so I lose the thread very easily. Keeping track of all the speakers and understanding when it’s my turn to talk as well as being able to devote any energy to choosing my words carefully is too difficult for me.

Getting ready to start my day takes me a long time and now I am much more forgiving with myself than I used to be. I have learned that I can accept how long basic hygiene rituals take me as part of my disability and not feel compelled to reduce that to better conform to an NT world.

My family were not at all accommodating and didn’t consider me disabled and in fact would deploy punitive measures to attempt to regulate my behaviour back in line with NT norms. Such as my mother denying access to additional cleaning products with the result that I could not leave the bathroom.

I recently had an argument with my sister on the topic of accommodations where she told me that “everyone pussyfooted around me” - not true at all. And that our parents tolerated my “controlling” and she wouldn’t and neither would the world. She also said that “I’d find life better difficult if I kept this up.” Haha - I didn’t know that the world was cruel and oppressive to disabled people until she let me know that it didn’t care about me. It’s not as if I have experienced that first hand or anything /sarcasm

It’s extremely difficult to get family members to read any resources on disability justice or take any steps to consider the systemic nature of how oppression works for any minority group. I’ve shared what I can from my education depending on what I have the spoons for but they expect me to do all the labour and communicate it to them and maybe they’ll listen.

Disparities in power dynamics between my allistic but ND older sister (OCD and an eating disorder) and me (in her favour) resulted in a lot of ableism and saneist invalidation over the years. She doesn’t have a lot of solidarity with me and as much as we’ve smoothed things over she has a very entitled attitude where her concerns are more important than other peoples. She is also very manipulative but that could be partly due to the fact our home life was very invalidating and she probably felt she had to compete with me for any concern from our parents especially my mother who exhibits a lot of narcissistic traits.

School bullying, minority stress and an emotionally abusive home environment have resulted in a number of trauma responses for me particularly concerning fear of abandonment by the most important people in my life, rejection sensitivity dysphoria, excessive people pleasing and conflict aversion. I am getting better in these areas with a lot of practice and support from my friends. I’ve handled a few difficult situations quite well lately that before would have caused me to shut down.

This was quite the monologue so thank you for having the patience to read this far.
 

Wy19

New member
Yea, my sister calls me a brat all the time, my mom trys to be accommodating but she's not, it's hard, I'm sorry I have no advice
 

BlueSkye

New member
Hi Scott thankyou for sharing your experience, so much resonates with me. I am female, and my autism is not so obvious to others, and so my difference was described as 'over sensitive' and 'my trouble' by my family. My family tried hard to make me 'normal' and this was very painful. It told me that i was odd and different, and that it was my fault. My mother still says things like 'of course, you don't mind not having any friends' , which of course I do mind, but struggle hugely making and retaining social connection. I have struggled most of my life to try not to be weird, thinking that there would be a way of changing my way of being me, to fit better. ie not to be bullied, blamed, confused when people are mean. As i now see myself with autism, this is turned on its head. I now feel that the lack of acceptance by my family as a major loss, it hurts. my mother is also a potential narcicisst and my brother sees me as the problem, and frequently wags his finger and asks me if i know what my trouble is? I now know that i don't have trouble, if he has issue with me, it is his issue. I have used an autistic trait to my advantage, and comparmentalised my family without great showdown or row, i have simply recategorised them as 'neighbours', so they don't get to have an opinion about me anymore. They haven't noticed. And i feel so much better. limited contact, i don't tell them any personal information about my life, small talk only. I don't expect or request any support from them, and i require no judgement or opinion either. it has taken effort, and it is not without disappointment and pain, but moving on with the new autistic me, is a little less stressful. I am nearly 60 and my little brother is 58. I am too old for finger wagging. good luch :)
 

Sammy1985

New member
Hi Scott, thanks for sharing something that’s clearly very personal to you and has clearly caused you a lot of distress and upset at times.

I’ve had fairly similar experiences, and personally due to my family’s lack of knowledge, understanding and awareness, I’ve decided to distance myself with them and keep my Neurodiversity to myself (ASD & combined type ADHD - I’d probably be labelled as ‘Asperger’s’ or ‘high functioning’, if those terms were still widely used, but I disagree with labels of functionality. ADHD diagnosed 18 months ago, ASD diagnosed 3 months ago.).

My family members also display manipulative and narcissistic behaviours towards me; since learning more about the ND I have and realising how self-aware I am becoming now, it’s led me to look at my family members and see comparisons in behaviours which I display which I realise are now traits of my ND conditions. I can see a lot of similarities between my behaviours and theirs, which makes me think that likely they could also be autistic +/- ADHD, which would explain why they think I’m “normal” and invalidate my daily struggles that I’ve had all my life. It would also explain why no-one ever picked up on any of my traits or difficulties, and it took the pandemic for me to hit rock bottom and make a self-discovery.
Having this realisation has brought two thoughts/feelings:

1) being that I can lower my expectations of my family as I’ve realised that my parents would never acknowledge or accept me telling them that they were autistic or ADHD etc. and if they content with not knowing, is it worth me disrupting that for them at their age?!…probably not for many reasons! So I try to take a lot of their narcissistic/manipulative comments with a pinch of salt, because I notice that I sometimes make similar comments and it’s due to my conditions and lack of understanding at times etc., not because I wish to be unkind, manipulative or narcissistic. And when I’ve had arguments in the past saying they are being manipulative/narcissistic etc., they always say they’re not, so I wonder if it’s communication breakdown.

2) I can keep them somewhat at a distance in order to protect myself emotionally from them, so that I’m less at risk of further emotional abuse.

Sorry for rambling on, and telling you my story, but that helps me to explain my situation in order to relate to yours. The point I’m trying to make is that they may suffer with similar challenges to yourself but not have the awareness and/or diagnoses that you have, which could be causing clashes between you all.

Although your sister has a diagnosis of OCD and an eating disorder, some of what you describe sounds similar to autistic traits which I have, and autism presents very differently in women than it does in men, and for that reason it can often be missed and hidden. Please be aware that I am not in any way trying to diagnose your sister, but I’m merely trying to explain that it could be that your family’s Neurodiversities conflict with each other’s.

Autistic women identify at a very young age that they are different to their peers and that in order to fit in socially, they must alter their behaviour. Whereas boys and men think and behave differently to women socially (amongst other ways), so this isn’t as important for them and therefore they generally don’t mask or hide their symptoms as much as girls/women do, so they’re generally noticed and diagnosed at a younger age. Also where boys may be disruptive in school, girls may be more withdrawn, therefore they blend in and aren’t noticed.

Although not strictly a solution, I hope that maybe my insight and experiences can help you to find better ways to manage your difficult situations with your family.

Sam 😊
 

Scott

New member
Hi Scott thankyou for sharing your experience, so much resonates with me. I am female, and my autism is not so obvious to others, and so my difference was described as 'over sensitive' and 'my trouble' by my family. My family tried hard to make me 'normal' and this was very painful. It told me that i was odd and different, and that it was my fault. My mother still says things like 'of course, you don't mind not having any friends' , which of course I do mind, but struggle hugely making and retaining social connection. I have struggled most of my life to try not to be weird, thinking that there would be a way of changing my way of being me, to fit better. ie not to be bullied, blamed, confused when people are mean. As i now see myself with autism, this is turned on its head. I now feel that the lack of acceptance by my family as a major loss, it hurts. my mother is also a potential narcicisst and my brother sees me as the problem, and frequently wags his finger and asks me if i know what my trouble is? I now know that i don't have trouble, if he has issue with me, it is his issue. I have used an autistic trait to my advantage, and comparmentalised my family without great showdown or row, i have simply recategorised them as 'neighbours', so they don't get to have an opinion about me anymore. They haven't noticed. And i feel so much better. limited contact, i don't tell them any personal information about my life, small talk only. I don't expect or request any support from them, and i require no judgement or opinion either. it has taken effort, and it is not without disappointment and pain, but moving on with the new autistic me, is a little less stressful. I am nearly 60 and my little brother is 58. I am too old for finger wagging. good luch :)
I totally relate to that and thank you for sharing this information here. The narcissistic traits from my mother and sister are so painful and disappointing. Both of them like to shift blame for the fact that they are ableist or well anything back onto me or whoever they are dealing with at the time. And the lies they tell and excuses they make for their actions. Infuriating.

I do think it’s best if I draw firm boundaries with them and engage a lot less. They have shown no willingness to provide accommodations or do anything to help. All my sisters advice is very controlling and of the nature “why don’t you overcome your autism and let the mental health professionals ‘sort you out’”?

I overheard my dad on the phone to my sister this morning and although two days ago he was complaining about disabled people for calling him on his ableist attitudes and behaviours he had the audacity to hypocritically invoke a long term injury that my mother has which affects her walking as ammunition in a petty personal dispute he was venting about. (The security guard at the local supermarket keeps abusing his power to stop their trolley when leaving the building. Admittedly terrible behaviour by the cops Walmart hire to protect their private property but he never opposes the oppression of the capitalist system unless it affects him which considerably reduces the sympathy I feel) He used the word disability on the call then paused, mildly embarrassed, laughed and said that he shouldn’t use that word - presumably because of the context of my sister lecturing me for what she sees as unjustly claiming the label when I should just “sort myself out.”

The whole lot of them are completely self absorbed hypocrites. And that may seem like an unfair judgement but I have never known any of them accept responsibility for their actions and deliver a meaningful apology even once.
 

Scott

New member
Hi Scott, thanks for sharing something that’s clearly very personal to you and has clearly caused you a lot of distress and upset at times.

I’ve had fairly similar experiences, and personally due to my family’s lack of knowledge, understanding and awareness, I’ve decided to distance myself with them and keep my Neurodiversity to myself (ASD & combined type ADHD - I’d probably be labelled as ‘Asperger’s’ or ‘high functioning’, if those terms were still widely used, but I disagree with labels of functionality. ADHD diagnosed 18 months ago, ASD diagnosed 3 months ago.).

My family members also display manipulative and narcissistic behaviours towards me; since learning more about the ND I have and realising how self-aware I am becoming now, it’s led me to look at my family members and see comparisons in behaviours which I display which I realise are now traits of my ND conditions. I can see a lot of similarities between my behaviours and theirs, which makes me think that likely they could also be autistic +/- ADHD, which would explain why they think I’m “normal” and invalidate my daily struggles that I’ve had all my life. It would also explain why no-one ever picked up on any of my traits or difficulties, and it took the pandemic for me to hit rock bottom and make a self-discovery.
Having this realisation has brought two thoughts/feelings:

1) being that I can lower my expectations of my family as I’ve realised that my parents would never acknowledge or accept me telling them that they were autistic or ADHD etc. and if they content with not knowing, is it worth me disrupting that for them at their age?!…probably not for many reasons! So I try to take a lot of their narcissistic/manipulative comments with a pinch of salt, because I notice that I sometimes make similar comments and it’s due to my conditions and lack of understanding at times etc., not because I wish to be unkind, manipulative or narcissistic. And when I’ve had arguments in the past saying they are being manipulative/narcissistic etc., they always say they’re not, so I wonder if it’s communication breakdown.

2) I can keep them somewhat at a distance in order to protect myself emotionally from them, so that I’m less at risk of further emotional abuse.

Sorry for rambling on, and telling you my story, but that helps me to explain my situation in order to relate to yours. The point I’m trying to make is that they may suffer with similar challenges to yourself but not have the awareness and/or diagnoses that you have, which could be causing clashes between you all.

Although your sister has a diagnosis of OCD and an eating disorder, some of what you describe sounds similar to autistic traits which I have, and autism presents very differently in women than it does in men, and for that reason it can often be missed and hidden. Please be aware that I am not in any way trying to diagnose your sister, but I’m merely trying to explain that it could be that your family’s Neurodiversities conflict with each other’s.

Autistic women identify at a very young age that they are different to their peers and that in order to fit in socially, they must alter their behaviour. Whereas boys and men think and behave differently to women socially (amongst other ways), so this isn’t as important for them and therefore they generally don’t mask or hide their symptoms as much as girls/women do, so they’re generally noticed and diagnosed at a younger age. Also where boys may be disruptive in school, girls may be more withdrawn, therefore they blend in and aren’t noticed.

Although not strictly a solution, I hope that maybe my insight and experiences can help you to find better ways to manage your difficult situations with your family.

Sam 😊
Hi Sam. Thank you for your response and insight. I also disagree with functioning labels as I think they minimise the support needs of us all and are a tool of enforcing “aspie supremacy” within the autism community.

I’m conflicted in how I feel about that point re: narcissistic behaviours because there is a long history of ND and “mental illness” in my family going back generations. And my family have always adopted an attitude that there is a virtue in “getting over it” despite being insufferable whiners about the most trivial things.

And while I know that the directness many of us have contributes to the perception that we’re rude and results in a lot of tone policing when we explain any issues and is often mistaken for passive aggression my issue is not with the way my sister presents her message but the contents of it. Saying it more gently doesn’t make it not ableist.

I definitely agree with lowering my expectations for them and not trying to expend any further energy educating them as they are unreachable and will have to take this journey on their own if they take it at all.

This is said with no offence to you at all but I don’t agree with ascribing narcissistic traits to autism - we are often misunderstood because when we do say things we communicate directly and people insert meaning into our words which we didn’t put there but that is different to the excuse making and blame shifting that my sister engages in. She is very direct and I don’t object to that - it’s helpful to not have to tease out meaning, she drops the mask on her own, and I’m not left wondering whether it was a micro-aggression or a miscommunication.

That is a good insight re: masking though - my sister observed that she felt very alienated from everyone else and masked to fit in whereas I never developed that skill to that extent. I tried to mask to make the bullying stop but it didn’t have much effect. I mainly couldn’t force myself to speak or socialise much at all. I was the opposite of disruptive but I’m sure that my inability to talk and understand things that were considered “common sense” were ascribed to bad behaviour and stubbornness rather than genuine difficulty.

I was not diagnosed at school and I still don’t have an official diagnosis though I am in the process of acquiring one. These efforts have been set back because of a long period of burnout.

My school did force me to attend psychologist assessments though and they placed me in special education classes. They also tried to get me issued with a statement of education for learning disability.

I never had any friends for such a long time and the few that I did make in school were other people who were treated as social outcasts.

Thank you for your response Sam and for reading mine 😊
 

Scott

New member
Yea, my sister calls me a brat all the time, my mom trys to be accommodating but she's not, it's hard, I'm sorry I have no advice
Thank you for your supportive response. I’m sorry that you’re going through this experience too.
 

Garden Gnome

New member
Hi Scott,
I'm out of spoons but I didnt want to read without acknowledging your post. It must have been difficult to write and it's always risky putting our feelings out there when we have a collective history of being misinterpreted and ignored.
You deserve better. I dont know if you are able to asset firm boundaries so their behaviour doesnt impact you so hard. Do you have a support network of friends. I came out as gay when inwas younger and we have an unwritten policy of 'family are the people you find along the way'.
I hope something lovely happens to you today and I'm sorry I've not ben able to offer anything of much use.
In solidarity and friendship,
Liz
 

Scott

New member
Hi Scott,
I'm out of spoons but I didnt want to read without acknowledging your post. It must have been difficult to write and it's always risky putting our feelings out there when we have a collective history of being misinterpreted and ignored.
You deserve better. I dont know if you are able to asset firm boundaries so their behaviour doesnt impact you so hard. Do you have a support network of friends. I came out as gay when inwas younger and we have an unwritten policy of 'family are the people you find along the way'.
I hope something lovely happens to you today and I'm sorry I've not ben able to offer anything of much use.
In solidarity and friendship,
Liz
Hi Liz

That’s so kind and thoughtful of you to respond even though you are low on spoons. I really appreciate it. Thank you for your kind words of support- that’s worth a lot to me.

I am fortunate enough to have met a wonderful group of friends. We haven’t met in person yet but we chat online with each other fairly regularly.

Solidarity and friendship to you too.

Scott