Anatomy of a Neurotypical Mother

My son is autistic, I am not, but neither am I neurotypical. I’m not a fan of the term “neurotypical,” I don’t find it meaningful or helpful. I’ve analysed and attacked its use before, so I won’t retread that path. This post is an illustration of sorts, and a very personal one. An illustration of the absurdity of the term neurotypical, but more importantly, an illustration of the simplicity and distortion in this claim: That because I don’t have autism, I can’t understand my autistic son.

By karmaOWL

Autism, as it’s currently defined, is a cluster of symptoms. Some causes of autism are known, many are not. Diagnosis is symptom based though, and I lack the number and intensity of symptoms to meet the diagnosis. I am not autistic. But…

Water scratches my eyes. The sensation of water running over my eyeballs is painful and distressing. In the shower I put a lot of effort into avoiding the water falling anywhere near my face, if I get water in my eyes the pain will force me out of the shower in desperate search of something to remove it. I can handle water – even heavily chlorinated water – on my eyes, if they are fully immersed before I open them, but water running over them is horrible.

I thought everyone felt this way, it never occurred to me until I was an adult that this might be unusual. I thought everyone else was just braver than me and better at hiding the pain. The ads and movies where people stood in showers with water running over their face always made me cringe and feel uncomfortable.

So when my autistic son complained of it hurting when water got in his eyes, and panics around water on his face because it might get in his eyes, I understood and I empathized and sympathised. I get it. I’m not autistic, but…

I have debilitating anxiety at times, at its worst it forms into a panic attack. Growing up I didn’t know it was a panic attack, I didn’t know what to call it. I thought I was just me being more fearful than other people and that I needed to stop being so “precious.” Nights of nerve-shattering dread and not even knowing what I was afraid of. Terror so forceful that I felt folded in on myself, somehow unconnected and overly-connected to everything around me. As an adult I learnt calming techniques through the experiences, in particular I learnt that seeking intense pressure from someone or something, across my entire body, helped me to calm. The more squashed I was – the more unable to breathe even – the calmer and more even my breathing and heartbeat got, until I felt in control again. I learnt other calming techniques too, relaxation methods that also help.

So Temple Grandin’s squeeze machine for the purposes of calming an anxious body and mind, makes intimate sense to me, as does my own son’s calming response when we pressurize his joints (shoulders and hips especially). So I get and understand that. I’m not autistic, but…

There have been times in my life where I was so obsessed with repetitive actions that they disturbed my daily life and would get me in trouble. I felt compelled to do certain actions over and over, even though I knew they served no function other than to feed an endless loop; doing them didn’t calm me, but not doing them did upset me. I had routines that had to performed in certain orders, I even made up rhymes to say to myself to keep the order right. If the routine went wrong I couldn’t focus on anything else until it was corrected. These behaviours were at their worst as an anxious teenager. As an adult I am more aware of these proclivities and that they emerge when I’m under stress, I’m much better at managing them with sensible strategies (like using meticulous lists, and talking things through with my husband), so they no longer negatively impact my life.

My son too has repetitive and obsessive behaviours, which I try to help him find ways to manage so they don’t negatively impact his life, ways that reflect the meaning and function of the behaviours in his life which are different from the function of my own. I am not autistic, but… (last one!)

I feel like I’m faking this socializing thing. I feel like my childhood was made up of fluked friendships. I was always suitably surprised when I ended up with a best friend, and I always doubted that I deserved it because I wasn’t sure what I’d done to get one in the first place. I even had one best friend who ended up in tears, pleading with me, asking me why I couldn’t just see that we were friends, that I didn’t have to act or feel like I didn’t deserve her. Inevitably all my friendships would fall apart for one reason or another, I found it hard to maintain friendships, they felt un-natural even though I enjoyed having people to talk to and be around. It was like I knew what to do in theory, but the practice never turned out the way I thought it was meant to.

These days, as an adult, I actively and very consciously work to build and maintain friendships. It is still hard, but I do enjoy the encounters that come from friendship, and I feel better equipped to do and say the right things. I am driven particularly by the fact that it is in my son’s best interests that I create friendships with other parents with children. I also have a much better understanding now of how important friendships – and not just acquaintances – are to the work environment.

So I see my son struggling to make and maintain friendships. I see him wondering how to make it work, and wanting it to work, but sometimes just preferring his own company in a way that very few children his age do. He has it much harder than I did, there is no doubt of that at all. But I see traces of myself in his concerns and challenges. In this. In all of these things. He is, after all, my son. Born from my body, there is no closer connection between two humans.

So when someone – some stranger on the internet, and these strangers run numerous highly vocal and popular Facebook sites and blogs – when these strangers tell me I can’t truly know my son like they can, because they have autism and I don’t… When they tell me I can’t understand his challenges because I don’t have a diagnosis… When they tell me I am “neurotypical“…

When they tell me I am “privileged

When they say my voice is less important than theirs and they can speak for my son better than I can..? Than the woman who birthed him, raised him, has spent every day of his life watching and learning about and loving him?

They are wrong. And I shouldn’t have to say it, because they should never assume to know someone else’s neurology or life experiences or life challenges. I have tried, in many posts (such as this) to explain when neurology is key to an argument, and when it is not. Because sometimes it matters, and sometimes it just doesn’t.

I am not autistic.

But neither am I neurotypical.

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39 Responses to Anatomy of a Neurotypical Mother

  1. extremeparenthood says:

    Very well said, my friend.

  2. Julie Sparks says:

    VERY well put! I really don’t like all these “us vs. them” battles that autistics seem to really promote but as my hubby pointed out, “When was the last time you won an argument with your 18 yo autistic son?” That would be … never! lol

    • Yes, the dividing lines of the “battle” are so un-necessary, there are multiple perspectives and so much to learn from hearing them, it’s such a shame to try to shut down discussion on the grounds of neurology (and ironic of course).

  3. Sharon says:

    Ive learnt more about myself since having my two Aspies then the 30 odd years prior, I relate to their various idiosyncrasies. This also applies to my husband. Neither of us are diagnosed, but no one knows my kids like we do. They are after all cut from the same cloth.

    • Well said, and I feel the same: I have learnt so very about myself from both the experience of parenting, and from the fact I am parenting an autistic child. Thanks for commenting Sharon 🙂

  4. I can’t express how much this resonates with me. I see so much of myself in your experiences. Our sensory issues are slightly different but the feelings associated with them are parallel.
    I agree with you 100%. I don’t have autism either but…
    Brave piece. Thank you for sharing it.

  5. Damn straight. I have no doubt that so many of us parents can relate incredibly well to many of our children’s issues. What is different for my kids compared to my husband and me are the intensity and number of issues and challenges. But between the two of us, we can understand almost every aspect of our children’s difficulties. –KWombles (signed in on another profile and too lazy to change it).

  6. This is awesome! And so DEAD ON. I’m so the same with with water- except I hate the feeling of it running down my body until my body is totally wet. I hate the feeling of it running down my arms when I wash my face.

    I get overstimulated and anxious in large crowds. I can’t stay.

    I still don’t get this whole friendship thing in real life. I am way more comfortable online where I don’t have to look at faces or gauge reactions. I’m not good at it and it makes me anxious.

    I have severe ADHD.

    I’m not autistic but definitely not NT either.

    • I find it so interesting to hear how other parents have similar issues and challenges (and on a personal level it makes me feel less alone and more understood), I really appreciate you sharing. Thank you Lexi.

  7. HI! I am also a non-neurotypical, non-autistic mother. When I first heard the word “privileged” I too took issue. After all, that term is used in common language as a derogatory term to explain “spoiled.” However, I have since learned that the use in reference to disability and race is very different. It simply means we can never fully comprehend what it’s like to be the person in question. For instance, I am white privileged because I can never know what it’s like to be black.

    When used by the disabled, it is the same thing. While we parents can watch and feel pain when our children are not treated well, we still can never fully comprehend the child’s pain – we cannot experience it directly. Our pain is definitely our own – and that works both ways. We are privileged to not feel exactly what they feel.

    I rely on the self-advocates with disabilities to help guide me. When my son was born, he did not come with a manual – I’m sure you know what I mean! No child does, but much of what I knew about raising a child went out the window because his neurology required a very different parenting style than what all the pediatric baby rearing books advised. Then when things went terribly wrong in his school, I had little help from the rest of the non-autistic world. No one seemed to be able to help us. It was then I found the self advocates who began to give me real advice to help my child. Things I took for granted were no longer taken for granted when I got those different perspectives. Many well meaning non autistics tried to help but their advice continually backfired. It was the adults “on the spectrum” that helped me better understand how to parent my child.

    I hope this helps you. I know there is much tension because sometimes it does feel like parents are being dismissed. But when you look deeper, we aren’t being dismissed – we are being given advice – usually really good advice. And we’re in turn being asked to allow those who actually experience a disability to help guide the public conversation.

    • Hi Amy,

      With great respect, I must say that your comment is not responding to what this post is about, but I do see why you think it is, and your heart is clearly in the right place.

      I have written about the “privilege” controversy on the post I link to in my piece, you can find it here if you’d like to see the detailed reasons I take issues with the term: https://autismandoughtisms.wordpress.com/2013/02/14/the-privilege-game/ . I’ve also already expressed strong awareness and respect for the autistic perspective on my blog, here is just one example: https://autismandoughtisms.wordpress.com/2012/12/23/autistic-adulthood/ . As for the different parenting perspective, there is no one blog post to point you to, since I have dealt with that topic as a key theme through-out my entire blog! (Just type the word “parenting” into my search engine for many examples).

      I do appreciate you commenting even though you’ve taken something from my post that wasn’t intended or reflective of my views. Thanks for taking the time to share your thoughts 🙂

  8. Alina says:

    I have been reading your blog for a while, but I have never commented before. Thank you for writing and sharing your experiences!

    As a researcher, I cannot really abandon the term “neurotypical”. When I am talking about my research, I have to have some name for typical population, and it’s a bit cumbersome to say “people who have no diagnosis of ASD or any other DSM diagnosis”.

    But you are absolutely right, ASD is a spectrum and it also continues beyond the diagnostic threshold, and there is no clear boundaries between mild ASD and people who have some ASD traits but not enough for a disgnosis, and between typical people who have some ASD traits and those who have none.

    There is a term that we use in ASD research, “broad autism phenotype”. It’s an unofficial term to describe people who share some traits with ASD, but just don’t reach clinical significance. From the point of view of genetics, people with broad autism phenotype share some risk genes for autism, and brain activity is in some aspects more similar to ASD, and in some aspects more similar to general population. Of course, it’s again an attempt to fit a continuum into discrete categories, but we have to define groups for our research somehow 🙂

  9. Zoe says:

    The autistic advocates I know would not say they know your son better than you do, or know his particular interests better than you do. What autistic people are saying is that we can speak for our community (autistic people) *as a whole,* better than non-autistic people can. Just as straight people with gay children can’t speak for the gay community as a whole, no matter how well they know their individual children. We’re not trying to take away your voice, but we object to the predominant idea that the only worthwhile autism advocacy is done by non-autistic parents.

    • But Zoe, you are repeating the exact error I am arguing against! You are grouping together “autistics” as if they all have one perspective (“What autistic people are saying…”), which is just as inaccurate and damaging as grouping together all “NT” parents! My post is upset at those who group all NT parents together, and use our neurology as grounds for dismissing our views and experiences. There are very many people who do exactly this, there are three specific blogs and Facebook pages I have in mind, where the commenters are often more extreme than the writers, in portraying all NT parents as worthless sources of information about what is in the best interests of the child. I intentionally chose not to identify the pages or blogs, because the issue is wider than who is saying it, it’s about what is been said (the argument, not the person), but also because I don’t want to engage in personal point-scoring. My post stands on its own merits. Please just read it for what is expressly is: a challenge to the simplicity of the statement that all NT parents are the same and can’t understand their children.

  10. jillsmo says:

    God, this is so good and honest and raw. Thank you so much for sharing these parts of yourself and for continuing to be such an amazing person and friend. I love you! ❤

    • Thank you for your support and encouragement Jill, I love you too ❤ (I wish that came out as the correct emoticon, somehow finishing on what looks like "less than three" doesn't have the same impact as a heart).

  11. Lizbeth says:

    This, just this. xxxooo

  12. I so wish I could give you a hug..even though I hate hugs. I hate to be touched. Of course I’m not autistic but I sure ain’t NT. Why should any parent feel ashamed of their NT’ness if they are? They aren’t less. Nobody is less no matter how they are born. This post hit the nail on the head.

    • “Why should any parent feel ashamed of their NT’ness if they are? They aren’t less.” I love that you make that point explicitly Christine, I couldn’t agree more, thank you for putting it into words.

  13. Matty Angel says:

    I would never say that a parent not know their child very well because I have autism and they do not.

    But I am willing to say that some parents can be wrong in their understanding of things. Its those parents that make me grumpy, the ones that shut out answers because they have decided they know everything about their child. I think maybe they are afraid to think they might not know everything. Which is strange because I do not even know everything about myself.

    That’s why I avoid reading parents blogs most time. Because if there is something that could possibly be wrong and I try to tell them something they might have known. Then… they get very mad at me.

    Just the other day I tried to explain to a parent that auditory hypersensitivity is not just problems from loud noises. But also problems with processing certain sounds, tones, pitch and sound direction and gave my own experiences and explained. But they were very mad about that. I try to never make anyone mad though and try not to read things or say things.

    I never ever call anyone NT I say, people that have autism, or people without autism… I know people with neurological and sensory problems that do not have Autism…

    hmm my comment looks all muddled up I hope it doesn’t read bad and upset anyone.

    • Not muddled at all Matty. I often find your views eye-opening and informative, and I have always found you to be a kind and compassionate listener and writer. I am honoured that you read and comment on my posts, I want you to always feel welcome and appreciated on my blog. I am saddened that a parent would angrily turn away your advice and perspective, I have no doubt that you offered up your insights in a thoughtful manner; they should have treated your knowledge and shared experience as something worthy and important. Even though we have only ever interacted online, I think of you as a friend, and a very wise one at that. Thank you for taking the time to comment xxx

      • Matty Angel says:

        🙂 🙂 I like your words and I like when you see my words too! 🙂 I like you reading my website posts just as much as you like me reading yours 🙂 Yes we are kind of word online friends !!

        I can’t wait till you read autism and me parts 2 and 3 🙂

        Thank you for your kind words about myself. I try my best to always be wonderifical and good and helpful. I love to try be helpful.

        I find a lot of parents think they understand their child perfectly… when really they are and always will be learning about their children… and thats not just parents of Autistic children, but all parents 🙂

        I think that….

        All people are someone’s child… And all children are constantly learning… This means that no parent will know everything about their child… And no child will know everything about themselves. How can they when no person knows everything?

  14. joeymom says:

    I always get antsy when people tend to use “neurotypical” to mean “not autistic” because I am also not autistic, but have serious sensory and executive function issues. I’ve known since I was quite little that I didn’t see and understand and think about the world in a way that was more common and accepted as “normal”, but I do not have the serious communication and interaction issues my son experiences- I am not autistic. I am me. And though I do not speak for my child and his experience, I do have observations about it and can empathize with his needs and experiences. I can speak about him, until he finds his own voice to give us a clearer idea of his world. Just like anyone else I might know- we are, after all, unique.

  15. ec says:

    The whole point about ‘neurodiversity’ though is that it embraces the fact that there’s a whole differing range of neurological landscapes out there. Some may be more standard combinations than others, but there really is no one standard plus deviants.

    The fact is that the people, autistic and otherwise, who have chosen to use it as a dividing point between autism and neurotypical, and that one is superior to the other (both ways, no finger pointing here) are missing the point

    Incidentally, I don’t think I have met an autism parent who I would class as ‘NT’. In most cases, in my limited experience, one can see the genetic lines running most definitely through. in our case, everyone used to comment how like the boy I was when he was small. Then he was diagnosed and they stopped saying it. But I now have my own diagnoses- bipolar, anxiety and a non official nod towards some not-enough-for-a-dx Aspie traits. Doesn’t surprise me in the least he’s my child!

    • That’s what I find hard to fathom about the current trends in the Neurodiversity movement: I’m of the view that a truly accepting and open-minded neurodiverse attitude would not be about declaring who wins or who is best or about throwing up barriers, it would surely be about acknowledging differences without automatic judgment for which category you may fall into, or trying to force everyone into some tidy box and expecting everyone to stay in their box without wandering from one to the next. Currently, the movement is most strongly associated with putting down those who are somehow “normal,” for being boring or ignorant or lesser, which is just as bad (to my mind) as saying any such simplistic thing about someone with a confirmed diagnostic label.

      • ec says:

        But this is perhaps understandable. Many of who I would consider the loudest shouters have something- in my opinion- to shout about. Perhaps they were misdiagnosed, perhaps they were let down by the education system, perhaps they’ve gone through countless behaviour modification programs/ punishments just for being autistic. Perhaps they are still battling, every day, to get the services and supports they need. If you were in that situation, wouldn’t you perhaps think ‘these non autistics, they just don’t get it’? Sometimes I read the most judgemental posts and while I do disagree strongly with what is being said, I do feel they have a right to their anger. many of our guys have been treated appallingly.

      • No, I don’t think that has much at all to do with mistakenly thinking there are tight divides between NT and autism, the NT category and word is just too simplistic, unhelpful, inaccurate. As for being angry, anger is not a healthy or helpful emotion, and it usually hurts the angry person the most. Do I understand the anger (against the people or institutions that hurt them)? Yes. Do I think it’s good that a few vocal people allow that anger to structure all their interactions with other people who they decide aren’t autistic? Of course not. People have abused and hurt me too, but carrying around the hurt and directing my hate at everyone who fits into a broad and inaccurate category, is good for no one, least of all me.

  16. Stephi says:

    O.o Oh my.

    I don’t have autistic children, nor do I personally know any autistic children, but I have many acquaintances/friends who do have autistic children and I am working towards being a Family Court/Social Worker Expert Person, so learning about various dynamics is important to me, so that I may empathize with all sorts of different family dynamics.

    Your post, minus the having an autistic child, described me to a perfect T. And I agree with your sentiments wholeheartedly. I may not personally know someone who is autistic, but that doesn’t mean I can’t be supportive of those who do or assist in helping them fight their battles for services or assistance or freedoms or any number of things they may be shut out of due to their ‘non-normalness’. My sentiment goes the same way for folks who may practice a different religion, sexual (legal, consenting) partnership, lifestyle, social standing, et al; we’re all human, therefore should each be treated with as much respect as the next person and the respect we would want for ourselves.

  17. Such a very powerful post. Your bravery, wisdom, generosity and kindness always remind me of why I’m grateful to count you as a friend. I’m sharing this post with the world.

  18. Valerie says:

    Amen to that…..my experience as a mother to my son with Asperger’s is very similar. Thank you for such an eloquent post.

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