Penelope asks why do I keep talking to people who make me crazy?

This is an email I received. I read it an I felt like she really needed to talk with someone, so I sent her my phone number and told her to call me.

Dear Penelope,

I’m a mom to a two and a half year old. turning forty in April.  My daughter seems to be verbally and emotionally gifted. I’ve been at home with her since her birth. I’m a public school teacher on unpaid leave. My spouse and I struggle financially and are basically being supported by family. He’s in real estate.

I definitely have ADD, lots of trauma from a very very difficult childhood- mother is probably severely autistic, divorced parents, father got custody. Father is a narcissist he was very abusive emotionally (maybe sexually, there was an investigation in the 90’s but they let me live with him for ten years after- i don’t remember details.)

Everyone says I’m a great mother because of how verbal and advanced my daughter seems. But I struggle with socializing with other parents. I start conflict, I have crippling anxiety, i’m awkward and flirt weirdly with people, and have weird hygiene sometimes. Ok I’m autistic I get it!

I’m so scared that as she gets older she’s going to  realize that her mother is a complete loser. I’m also scared that she won’t get the childhood she deserves. she deserves everything all the love, all the experiences, all the nature and community that i  can’t give her. Yesterday she asked a lady in the park if her and her son wanted to play with her and she snubbed her. We know this lady and in the past she was nice and I know it’s because she doesn’t like me because of something I did or said. (She’s winning at life this woman btw this woman. A hot but down to earth pilates instructor with a gorgeous mixed raced son that attends forest school and a husband that builds shit.)

Btw my daughter took the rejection so well and made our time at the playground so much fun! She’s an old, wise, confident, resilient, soul!

The interaction haunted me all night. I take my daughter to the playground and walk around giving people mean looks because I’m dealing with crippling anxiety and fear of rejection. I act weird around the kids. I think i’m autistic although my husband says no. I feel like Im ruining my husbands life too! My daughter is very resilient, strongly attached, funny/ like hysterical, but maybe is already struggling because of us. Maybe she’s autistic too?

Anyway, Im starting a job as an early intervention coordinator so please don’t tell me to do early intervention with her. Can you advise on how to go forward? We need community, nature, and money to be good parents and at the moment I don’t have access to enough of any. We also need happy and confident parents but that’s not us either. I just wanna cry!! BTW I’m  INFJ, my daughter was surprise covid baby after a short time dating my husband (we aren’t really married), I come from traditional Jewish background sort of…so lots of religious trauma. How do I help my daughter not become me and instead win at life? I need her to win at life and is there a chance for me to win also?

Sincerely, [redacted as an act of mercy]

That’s the email. She called me twenty minutes later.

I said, “What do you mean I shouldn’t tell you to do early intervention?”

She said, “I just don’t think my daughter needs it. She’s brilliant. [Blabh blah blah ten sentences about brilliance. Maybe fewer because I probably interrupted her.]

I tol her part of being autistic is being brilliant. She said she’s not brilliant. I said you are gifted. Part of having autism is being gifted. You had a mother who made you feel stupid so you have that playing in your head.

She said her mother is probably autistic but she and her daughter aren’t. Maybe her husband is autistic.

So I’m not telling you any more of the conversation. We just went in circles. She has a brilliant daughter and she thinks she and her daughter should both be shining blah blah.

After fifteen minutes she told me okay she sees that she is trying to live vicariously from her brilliant perfect daughter.

I told her don’t use perfect about a kid. It’s awful pressure and no kid’s perfect.

Why I’m writing this: I’m so tired of this exchange. It’s an every day thing for me. Every day I talk to someone who is unbelievably so clearly autistic and we have to argue about it. Because autistic people know everything. And I’m so so so so so tired of people saying their kids are doing fine when the kids are not fine but it takes 30 minutes for me to get them to say the reason their kid is not fine. I’m just really frustrated.

Just last week I had a dad tell me his kid is doing great in school.

I said, “Well, you’re autistic, so he’s autistic, so he probably has no friends.”

The dad said, “Well, he doesn’t seem to want friends so it’s not a problem.”

This did not even surprise me. It’s so frequent. I am just crushed. That’s it, really. I’m crushed. I don’t really understand why all my readers are autistic and all of them don’t realize they are. I don’t understand why people don’t see autism as a family disorder. There is not one autistic person in a family. It’s fucking genetic.

The whole problem starts with people thinking autism is a problem. It’s not a problem. There’s nothing inherently bad about it except that not understanding that the family has autism means people do messed up things to cope with autism. Like sex abuse, or yelling, or parentification. It’s so easy to see. It’s patterns. I’m so frustrated. I don’t want to be the person always arguing that yes, it’s autism. I want to be the person collaboratively learning about life with autism.

It’s so fun to talk with people who know they have autism and we can learn together. I always think the phone call will be that. I always hope for that. Okay.  Thank you for reading.

30 replies
  1. Dana Martin
    Dana Martin says:

    Wow! That was quite an essay she wrote you, esp if it was her first ever email to you! I got confused afterwards when you were trying to explain who was autistic and who thought was autistic.. But maybe that’s what you’re saying about whole families being autistic.

    You know more than anyone else about autism so I can’t imagine that anyone asking you for advice would be learning “with you.”
    Maybe stop the counseling although if you’re more frustrated than satisfied (feeling that you are actually helping people).

    Reply
  2. Ann
    Ann says:

    Hi Penelope,
    What is a way for Autistic people to have a friend or manage friendship?Other than an extrovert deciding to adopt you.They just organise everything and you sort of Coast along in their wake.This fails when they get busy ,move away or find another weirdo to befriend.

    Reply
      • Ann
        Ann says:

        I think maybe I do it by doing courses.There’s one for writing a book now.Loads of the people in the group advertising it seem to on the spectrum.Only issue is I did another business course recently and havn’t implemented everything yet.I’m wary of spendingg more money.And I still didn’t manage to open yours.Most of the people( mainly women) have finished and published their books.

        Reply
  3. Louise Higgins
    Louise Higgins says:

    She can do the eval for early intervention and if her daughter truly does not need therapy then they won’t qualify. The therapists are really good at spotting potential autism in children. Our developmental therapist was like a “whole family” therapist, talking to us about all sorts of things related to parenting and life. Because of Penelope’s blog I at least know where my deficits are and can work at being more social / extroverted and to not talk about myself and dominate the conversation the whole time, and to give myself a rest period after a taxing social situation if needed, and to offer the same support to my kids.

    Reply
  4. angie
    angie says:

    I am one of those people who declares that I am not autistic, but read every single one of your posts about autism and go “that’s pretty insightful” – So maybe I would drive you crazy too Penelope. I remember once commenting on a post where you said “the autistic mum is the one that hasn’t done her hair’ or something like that and I was like “I never do my hair because its an active choice to not be bothered by it..that doesnt’ make me autistic”… I think that’s where I get confused about autism, nuerodivergance, adhd and everything else in the mix. Some things I feel like I’m actively choosing to do either as an act of rebellion or just preferring to prioritise other things (e.g just not caring about having perfect hair/makeup/clothing), others i’m realising are inherit characteristics of my brain (extreme procrastination and avoidance of certain tasks that other people can.just.get.done) and sometimes I just don’t know what the hell is wrong with me (I hate socialising or being part of ‘groups’ even though I’m a people person and very socially aware).

    I read this email with a great deal of empathy for the author. I’ve got 3 girls (8,6,4) and each year older they get the more terrified I am of them suddenly realising that I am actually hopeless as a mother. Right now they treat me like I”m the most awesome person on earth, but all I can see down the track is them being conscious of my terrible organisation, lack of ambition/drive and general disdain of most of the world :). As I kid I would loudly and proudly talk about my parents being farmers as I saw them work hard and it felt inspirational. I have an office job that I hate and can’t really describe to people and avoid doing it as much as possible in front of my kids. I often wonder if maybe I just have too much time and privilege to be able to ruminate over this than my parents did when I was a kid (and they had to physically work their guts out to just make a living).

    I don’t know if any of that makes sense, other than to say I am always relieved to come here and see new blog and mailbag posts that give me something to think about :)

    Reply
    • Penelope
      Penelope says:

      Angie. Normally, a comment like yours would make me want to drink wine all day. I’m really losing patience. But actually, I learned something from your comment. You think because you’re making autistic choices you’re not autistic. That’s fascinating to me. You think that I don’t comb my hair because I forget? I don’t understand. Do you think I don’t know how to comb my hair? Do you think I don’t realize that other women care a lot about their hair and I don’t? Do you think that you have a deep understanding about women’s hair and I don’t, even though both of us have unkempt hair?

      This is what I mean when I say autistic women see other people but we don’t see ourselves. Angie, you think you are not autistic because you are consciously making autistic choices. That’s hilarious. It’s so crazy it NEVER ocurred to me that someone would think that way. It makes me think that the reasons autistic women don’t think they’re autistic are so far beyond what I could dream of that if I could just understand that, I would be less frustrated.

      Penelope

      Reply
      • Angie
        Angie says:

        Ouch, that was a bit bruising bit appreciate the reply. I guess writing it was a process for me to question a lot of my thought process. I am not surprised that there are a lot of women out there who are doing the same. I will say though that never have I wanted to avoid an autism diagnosis or label because I thought it was a bad thing. I just didn’t think it was me! It’s a great discussion to see happening here.

        Reply
        • Penelope
          Penelope says:

          I’m sorry. I didn’t mean to be bruising. This reminds me of when I’m angry about something else and I snap at my son. And then I have to say, I’m sorry, I’m in a bad mood, I shouldn’t have snapped at you. I’m just always in a fucking bad mood about autism, and I’m starting to think it’s bad for my health. Or my relationships. I mean, it is bad for my relationships.

          One of my oldest friends had her son call me for advice on what he should do for the summer between sophomore and junior year of high school and I told him he had autism and he should tell his mom to get him extra time on the SAT. I mean, he could not finish the PSAT and he wouldn’t tell his mom his score and he was crying on the phone because he is taking calculus as a sophomore and he didn’t understand why he couldn’t do the PSAT. So It’s not like I’m crazy here. Also, there are other things, like he has a shirt for each day of the week, and he’s been wearing the same shirt for each day of the week since he was 7. He just wears a bigger shirt as he grows. And the kids make fun of him.

          So anyway, my friend was like, we are done. Don’t ever speak to me or my kid again in your life. Yeah. So autism is affecting my relationships.

          So I’m sorry I snapped at you. I snap at everyone about autism. At least you didn’t let me talk to your kid :)

          Reply
          • angie
            angie says:

            That was a really nice apology – and so insightful.

            I thought a lot about it over the weekend and realised that whilst I was a bit taken aback at first with the brutal honesty of your reply – I have continued to think about it and ponder what it means for me. I know ultimately that is way more constructive than if I’d been given some sort of fluffy, feel-good response. I think I’ve spent my life getting feel good responses, or ‘oh no you are just fine” types of response when I’ve tried to talk about the frustrations I have with my brain. I wonder if your friend and her son may wind up in that spot too.

            I appreciate your work so much and I hope you are able to feel some satisfaction that you are making a difference in people’s lives – even if you do feel like you are screaming into the void ;)

  5. Tqp
    Tqp says:

    I don’t have negative connotations of autism. Maybe even positive, like it means it’s interesting. So when we talked and you told me I was autistic, I don’t want to acknowledge it because it feels like an excuse. Like an indulgence.

    Reply
    • Penelope
      Penelope says:

      That is a negative connotation. Excuse = negative. Also, not believing you have autism is an excuse to not take responsibility for how you relate to people.

      Penelope

      Reply
  6. Occasional Reader
    Occasional Reader says:

    Something about this whole story isn’t making sense. The writer openly acknowledges that she is autistic and even suggests that her daughter is also autistic:

    * I’m awkward and flirt weirdly with people, and have weird hygiene sometimes. Ok I’m autistic I get it!”
    * I think I’m autistic although my husband says no. I feel like I’m ruining my husbands life too!
    * My daughter is very resilient, strongly attached, funny/ like hysterical, but maybe is already struggling because of us. Maybe she’s autistic too?

    And then later Penelope writes this about the same woman “She said her mother is probably autistic but she and her daughter aren’t. Maybe her husband is autistic.”

    It just doesn’t add up. It honestly sounds made up–especially since the letter write and Penelope have the same writing style. And it also sounds like Penelope is sort of losing it. Like she started writing a story and then forgot her basic plot points? Penelope is usually an excellent writer and lately, the writing has been devolving: illogical, harried, and difficult to follow. I hope you’re OK, Penelope.

    Reply
    • Penelope
      Penelope says:

      I love that you think I made a letter that is that long. It would really show a lot of patience and dedication. I’m an ENTJ. The letters I make up in mailbag are one, very short sentence. Like, Dear Penelope. How can we tell which letters you make up?

      Reply
    • Minami
      Minami says:

      This doesn’t have the same writing style as Penelope at all. Penelope’s style is direct and non-meandering. This letter was very meandering. My guess is that the writer is actually an INFP, who often write this way, and also, the autistic ones act the way this writer is describing herself (i.e. off-putting to people and not understanding why or how they are being off-putting, but also being hurt that people are put off by them).

      It would also explain why the writer changed her mind about being autistic.

      Overall there is a lot of feelery emotion and fluffiness in this post, which I don’t think Penelope would even be capable of making up, assuming she would want to, which I seriously doubt would ever happen on her worst of days.

      Reply
      • Ann
        Ann says:

        I think you are right.It would be edited better,shorter and more to the point.I’m an INFP ,starting to accept I’m Autistic. I write meandering streams of consciousness that need to be considered a first draft.I don’t always have time to do this or correct typos.My comments are legible but could be there’s so many simple typos due to rushing,sticky keys and auto correct

        Reply
  7. Minami
    Minami says:

    Such a good post.

    I have an acquaintance who wouldn’t believe she was autistic because according to her, she “totally understood social norms, she just didn’t care about them and chose not to follow them”. I tried to explain to her that the not caring about the social norms IS the autism, and she didn’t believe me.

    I think the not admitting you’re autistic because you “choose” to do the autistic things rather than doing them inadvertently is very condescending to autistic people. As if you’re somehow better than the “actual autistic people” because you do your off-putting shit deliberately. It’s like internalized misogyny but for autism. We should come up with a term for that. Internalized neurodiversiphobia?

    Reply
    • Angie
      Angie says:

      I read this after Penelopes reply to my initial post. It felt a bit combative and accusatory. I just wanted to say that I’m sure a lot of peoples denial of autism is rooted in stigma but it’s also part of not having a real awareness of how differently autism traits may show themselves. The conversations here are really opening my eyes every time i read them.

      Reply
      • Minami
        Minami says:

        That’s probably because your comment set off something in me, that being the frustration I’ve felt with the experience I described in my reply to Penelope. There is something about the “I’m not autistic because I do the autistic things deliberately” attitude that has always rubbed me the wrong way…maybe “condescending” isn’t the right word, but I’m not sure what it is.

        Reply
        • angie
          angie says:

          I can see how it is frustrating. I never intended to be condescending in my comment, but on reflection can certainly see that it looked that way. However my words came out on paper, I was definitely not trying to say “i don’t have autism but I choose to do autistic things” I was trying to say “aaah I’ve been doing all these things for years and now I”m slowly realising that perhaps they are traits of autism rather than me just railing against the social norms or choosing to be different”.

          I appreciate the respectful conversations that are being had in this space – so thankyou.

          Reply
  8. Erika
    Erika says:

    This post and the comments are so interesting! I self diagnosed as Autistic and ADHD a year and a half ago at 51. Many ups and downs of emotions since then. I’m still trying to figure out “unmasking” and sometimes feeling imposter syndrome, like am I really Autistic? Regarding self care and social norms – for many years I have not shaved my legs during the winter months when wearing long pants all the time. But this last spring, for the first time, I decided to heck with shaving my legs at all. I do not enjoy the shaving, I don’t like the way the stubble feels, it takes so much mental energy to do… I felt like my Autism self awareness and unmasking allowed myself to take this step. But then I also asked myself, am I just doing this to stand out and “show” that I don’t care about social norms? Which came first, the chicken or the egg?

    Reply
    • Penelope
      Penelope says:

      I remember the first time I walked around with unshaven legs. I was a little nervous. I was in my late 20s. An aunt said to me, “That looks gross.” And I was surprised that my only thought was, “She is really stupid for thinking it’s okay to say that to me.”

      I remember so few moments from that time in my life, but I remember that. I think it’s because breaking a social rule seemed like it would be such a big deal and it turned out to be fine. For me. Not fine for everyone else, but I realized I didn’t care.

      Of course that was probably the beginning of the end. Like, I got weirder and weirder. But then look. Here we are, all the weird people together. So nice.

      Reply
    • angie
      angie says:

      Erika – what you have said here is exactly how I feel sometimes. My entire life I have not really cared that much about social norms or I’ve tred to adhere to them but felt really uncomfortable. I guess teasing out what the reasons for this are hasn’t really occurred to me until now. Autism was certainly not on my radar – and even when I’ve seen other autistic women talk about their life experience I haven’t necessarily related to it or thought “that’s me’. But this thread has opened my eyes up to the idea that there’s more to explore.

      Reply
  9. Ann
    Ann says:

    If Autism is genetic,how does it start?Gabor Mate has theories on if being a coping mechanism .Same with ADHD.I’m questioning so many things about my family and my own behaviour.Like why I’m so stressed when visitors come even if I’ve had notice.Or how I’m always uncomfortable whether I’ve been in an apartment, 2 bedroomed bungalow or two story ,4 bedroomed house.The common denominator is me ,my mindset and lack of capability

    Reply
    • angie
      angie says:

      Ann, I saw your comment on another recent post (I think it was you anyway!) about managing career and home and felt very similar to you. And then I saw this comment and went – OMG yes I go into hyper stress mode when anyone visits my house, planned or unplanned. Sometimes I just point blank tell people they can not go inside as its a total bomb site. Doesn’t matter whether I’ve lived alone or with other people or had kids or not . Kids has definitely made it much much worse due to how much mess they make – and how little I can be bothered at the time to tell them not to do it…I am getting better as I get older, but sheesh if you ask my family what its like to deal with me when there’s someone coming over, they’ll probably tell you otherwise :).

      Reply
      • Ann
        Ann says:

        Hi Angie,
        I’ve commented on a few things recently. I probably should turn on notifications for replies.I wonder if my thing with visitors is an Autistic thing or just a response to others in my family getting stressed about appearances around vistorsBut if Autism is genetic it could be because they are Autistic.
        I’m not too bad with a Father and son visiting my boyfriends house.The Dadbuilt the house ,he and his son were visiting before I moved in.They shout hello ,walk in the garage door and sit down.This I don’t mind as I make tea for the Dad,son doesn’t drink any and that’s the script.They will chat to me but have more to say yo my boyfriend..My toddler likes them.My eldest finds them loud do may hide on her room but if she has to come out she can interact with them.
        I don’t have a career as such.Two part time ,manual labour jobs.I did do a course on my phone( when feeding the baby).Was good for my brain but not sure I’ll implement the idea of subscription boxes.They did a sales funnel for us and we can re watch all the modules.The next course is about writing a book.I may not finish it but will get further than if I relied on my self motivation. I took a personality/ traits test which suggested I’m an Obliger.I get de railed with children’s requests or feeling selfish for doing my own thing.Thanks for replying to me.

        Reply

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