We are not all on the same side

I’m going to apologize ahead of time, because I know this is probably going to sound disjointed. I hope it make sense in the end.

Also, quick definition time. Allistic = not autistic. Please don’t confuse this with neurotypical/NT, which means non-neurodivergent at all. Some common neurodivergences that aren’t autism are depression, bipolar, ADHD, borderline personality disorder. If it’s in the DSM, it’s probably a neurodivergence. Allistic is specific to the autism community and is an easy way to say not autistic.

I have been an active part of the autism community online for four years if you count my time as a parent, and about a year and a half if you count my time as an autistic person. I keep hearing a few phrases that bother me, and I need to explore them here. They are the following:

“We all want the same things”, “we are on the same side”, “we all want what’s best for our kids” and “but my kid isn’t like you.”

If you say any of these phrases as a way to assert your role as a parent of an autistic person as equally important as an autistic person, well, to put it mildly, this raises my hackles.

“We all want the same things” makes me believe that you don’t listen to autistics often, even if you interact with us. Also, we do not all want the same things. Even among autistic people, there is a difference. But saying parents want the same thing as autistic people is ridiculous. Many parents want a cure. Many parents want easier ways to deal with us, to make their lives easier. Many parents want us to behave in a less autistic way. Many parents want to forever infantilize autistic people through guardianship and institutionalizing. Not some, not most, not all. But many.

“We all want what’s best for our kids” is something I hear a lot. That is a matter of perspective, because what an allistic parent wants for their kids may not be what’s best. There are all sorts of ideas about what is important for an autistic child, but rarely do parents consult autistic adults. Instead, they talk to teachers and therapists and pediatricians. Where are autistic voices in that?

Another thing I’ve seen is “this infighting is terrible!” It isn’t infighting when allistics fight against autistics. While not the same form of oppression, it is like a parent of an LGBT+ person claiming they have as much of a voice in the LGBT+ community as the LGBT+ person themselves. In what other group besides developmentally disabled people is this acceptable? It is infighting when autistic people fight against each other. And it is terrible when an autistic person is telling you how they feel about x, y, z autism topic and you shut them down, and “not my child” them. It is demeaning for you to shut down the argument of an adult autistic because you assume they are “too high functioning” to count or that your child could never be like that. What you see when you interact with me online is very different from what you’d see if you spoke with me in person. In addition, I will be turning 32 early this year. I am a much different person than I was at 7, 17, and even 27. I have grown up, and I’ve adapted.

Not every person you encounter who is on the spectrum will resemble your child. This is, in part, specifically if your child is nonverbal, you will see autism through your eyes, not theirs. If your child were to encounter someone who is autistic, yes, even an adult, they may see “wow, this person is like me, and maybe because they exist and they’ve been through what I have, I might be able to do those things, too.” Despite your protestations to the contrary, they may see a bit of themselves in me. You never know.

I may not be like your child. I do not neatly fit into your low or high functioning categories, nor into many of your other stereotypes regarding autistic people (which seem to change by the hour, the more is understood about autism). Your ideas about who I am is based on your own idea of autism. I’ve had people diminish my struggles and say they didn’t think I was really autistic (because I’m not Rain Man, I guess?) until I was slamming my palms over my ears, rocking and crying because someone decided to play a maraca next to my ear. And even then, they didn’t immediately think “autism” when that happened.

I’ve never read a story about someone like me, except through the blogs of other autistic people. Even those books that address people who are like me tend to forget that LGBT+ autistics exist, that POC autistics exist, that intellectually disabled autistics exist, and so do gifted autistics. There are autistics who always look autistic, and those who can pass for allistic/NT. I fall somewhere in the middle, where people see me as odd/weird, but because their ideas about autism are skewed, they don’t think “autistic” until after I tell them, and maybe not even then.

The point is, we are all different. Assuming we must all fit some ever changing stereotype of what it is to
be considered “autistic enough” to comment on autism-related topics and if we aren’t (according to outsiders), then it’s acceptable for parents to speak over us, to tell us we don’t count is ridiculous, insulting and invalidating.

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37 thoughts on “We are not all on the same side

  1. Loved this; well said. I’ve gotten the angry allistic pushback but not generally because I’m autistic and succeeded and thus can’t be “like your child”. I get it because I am autistic, and too disabled to financially support myself, and therefore am a “bad role model” and “discouraging”. Meeting people’s expectations is an impossible endeavor.

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    1. It really is a damned if you do, damned if you don’t, isn’t it? I saw a comment about how an autistic person who used to be a teacher “better be high functioning”, and it turned my stomach. I’m able to educate on a variety of subjects even when I’m not able to handle teaching in the traditional classroom.

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  2. Ibby, I read yiur blog, and enjoy it and hopefully learn. You said, “Many parents want to forever infantilize autistic people through guardianship and institutionalizing. Not some, not most, not all. But many.” Could you clarify, please? Because this seems to imply that guardianship is a negative, when it may be necessary in some situations.

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      1. Thanks, I think I read that post in the past when someone I follow retweeted (same as how I found your post) through Bridget. So I’m unsure if you shared that post as a negative about guardianship or as an understanding of why it is sometimes needed.

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      2. I did post it as a negative, but that’s me. That’s just how I perceive it, because I see how easily it can be misused. I’ve seen/heard/read about my fellow autistics’ abuse and how easily this could be used to deny them agency. Declaring an autistic adult, because of their perceived capabilities, the agency and ability to make decisions about their own lives – a group who is abused in astronomical numbers, many times by the very people entrusted to help them – well, it scares me. Declaring an adult an eternal child is scary to me. I won’t do it to my own kids (though I suspect I won’t need to, anyhow).

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  3. Well being in 2 world(on the autism spectrum and the LGBT community) it can be rough navigating both worlds because I am not accepted in either quite a lot. I have actually been criticized by a fellow person on the spectrum because I did things in my autistic experience that they didn’t do-like rock or hand flap,etc etc. I have been treated pretty badly from all sides but I have always tried to not judge people because they are different but I dont seem to be afforded the same consideration for some reason.I know autistic people are diverse and have differences and I accept that and do not criticize them because of their differences because I am different too.

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    1. Same. I seem to not really fit anywhere, exactly. I should write one day about the time I wrote an autistic character who resembled me and then was criticized and people assumed I had just googled autism because they were “too stereotypical”. Of course, these were allistic parents and siblings doing the criticizing. I’ve kind of accepted that I don’t really fit anywhere, so I make my own place (and tend to offend people for doing so sometimes).

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    1. Honestly, infighting doesn’t necessarily hurt a cause when it can be done with open communication. I argued very publicly on this very blog (a few posts back) with a fellow autistic about whether a cure was needed/some Autism Speaks stuff. I think that people need to realize that autistics are all different with different experiences and opinions and knowing that we may not always “get” social stuff means that there are instances where we do the “wrong” thing. Discourse on all sides is valuable. Unless, of course, you’re attempting to silence me or send death threats. That’s unhelpful.

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  4. This: “There are all sorts of ideas about what is important for an autistic child, but rarely do parents consult autistic adults. Instead, they talk to teachers and therapists and pediatricians. Where are autistic voices in that?” This is SO important.

    I have learned all that I value most about Autism from blogs such as your own. And while I also appreciate the vast number of blogs by NT parents of Autistic children for the sense of community it provides – our ability to share our love for our kids, not feel so isolated in our experience, and to help parents of newly dx’d children not be so shell-shocked – I do not see how anyone can refute the value of information and insight that is provided by actual Autistic adults. The blogs of Autistic adults mean *everything* to me, they have been the most important part of my education about Autism and understanding my sons. It frustrates me immensely when Autistic voices are ignored or marginalized, I am sure I cannot adequately imagine the level of frustration this causes advocates such as yourself. (my 5 year old is Apraxicl, so I have witnessed frustration in it’s purest most righteous form. i would be furious too if could not get my words out and people consequently constantly misinterpreted or flat out ignored me)

    So, from my family, I just want to say THANK YOU. THANK YOU SO MUCH. Some of us are listening, with everything we’ve got. Without people like you, and Ibby Anderson, and Julia Bascomb, and countless others… well, I actually *cannot* imagine where we would be as a family. Thank you for doing what you do.

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    1. Thank you! This comment is amazing and perfect, and you’ve kind of struck me speechless in the best way. I, too, am grateful for NT parents’ blogs. My daughter had just been diagnosed and we had just begun to question whether our son was on the spectrum, too, when my husband deployed (not six weeks after relocating 3000 miles away from home) to the middle of the Pacific for 4 1/2 months. I was alone and the unit that provided support to the families hired someone (who was there to provide childcare during info meetings) who called my daughter the “r” word during our first meeting. I went back only once to drop off a care package. It was support from other parents of newly dx kids and adult autistics that got me through. I am forever indebted to people like that.

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      1. You are so *very* welcome! It’s important you know how indebted some of us are to *you* too 🙂 Look forward to more posts from you, found you on FB so that I can keep up better!

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  5. I think perspective is a very big issue here. I walk through a nightmare I can’t quite describe I am searching for reasons, not as an adult but as a small child. I am a witness I saw what they did to our parents. Don’t judge them to harshly. I think you are confusing the voice of the medical industry with the motives of parents who follow them blindly.

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    1. I appreciate your comment. I think that understanding that this is not directed at all parents is important. There are some fantastic allistic parents. They advocate for their kids and their needs while listening, really listening to adult and teen autistics, people who have been there, who resemble their kids a lot more than their kids resemble their own parents. I have had to navigate the system. I know it isn’t easy. This isn’t directed at clueless parents but at ones who dismiss me outright, because they erroneously believe incorrect things about intelligence, or about autism in general. These are ones who tell me my voice doesn’t count because I can speak most of the time, the ones who tell me I don’t get an opinion because clearly, my autism is mild (their words, not mine), and how dare I question whether it’s wrong to take a photo of their 19 year old nonverbal autistic daughter post-meltdown, with tears streaming down her face and whether they have her consent, and these are parents who correct me and tell me that I’m wrong for self identifying as autistic and tell me the correct terminology is “person with autism”.

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  6. Sometimes, allistic parents only “help” in ways that stroke their own egos. If that benefits their child too, it’s just a bonus. They do not tolerate being told they are wrong. They prevent their child from seeing people who can actually help. They make insinuations about other people’s parents to justify their actions. And they are sneaky enough to evade detection until their child is an adult, at which point the child can get no other help than theirs. Yes, I’m a bitter autistic adult.

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  7. BRAVO!! I understand (being Aspie myself) where autistics may need assistance/guardianship with things like finances or organization in their lives. I am against belittling of people’s intelligence and this burns me to a hide! We truly need more programs aimed per individual need (i.e. Elderly parents?, planning for their “futures(?)” care/needs”, improved transitional life programs so they are not left in adult daycare or underemployed/underskilled in jobs where what passions/skills they posess are left to atrophy.

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    1. Yes, very much this. There are things I need help with, even as an adult, that many of my NT peers don’t need. I have my parents and husband listed as able to speak on my behalf with regards to healthcare providers, my kids’ schools, etc. That doesn’t absolve me of my rights. But I have help if I need it. And I often do.

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  8. I agree. I am both on the spectrum and parenting a child on the spectrum, and the first thing other parents tell me is “my child is not like you.” The second thing they tell me is”my child is not like your child.” Like you I think we all do share some traits or else we wouldn’t be on the spectrum, and it is a SPECTRUM right? People seem to forget that part. Anyway, I’d like to add that I wish it were all air hugs and acceptance among autistics, but it’s not. I know I’ve been shunned by individuals on the spectrum for not always being in line with their views. And I have found some of the radical neurodiversity people to be just as intolerant as those parents we are criticizing.

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    1. Yep, it is a spectrum, and it’s important to remember that functioning levels kind of don’t work as a theory in the first place, because we are people, not functions and I fail to see outside of the neurodiversity community (including other neurodivergences here besides autism, of course) where people are judged harshly because they can’t do x, y, or z, and are assigned worth based on that.

      I do, however, need to say that I don’t really agree with your assessment of radical neurodiversity. People are allowed to be angry. I don’t know what you’ve seen or what your experiences have been, but I have a few friends who fall into the category of radical neurodiversity and I find them to be blunt and to the point, and lacking in energy to sugarcoat their thoughts. That doesn’t make them harmful.

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  9. Found a link to this on Zoe Roberts FaceBook page. I really enjoyed what you said. You write well, in other worlds you kept my attention. I’m an :alltistic” I guess and I’m raising four kids, one with aspergers and another with autism…etc. Anyway, I hit share on my FB!

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  10. Fundamentally, the issue doesn’t even need to be autistic vs. allistic. It’s as simple as this: how many adults consider their desires for their own lives synonymous with their parents’ desires on their behalf?

    What if we restrict the question only to people with “good” parents, non-abusive parents who love them, have a close relationship with them, and genuinely want what they consider best for them? Now, how many adults with “good” parents consider their desires synonymous with those of their “good” parents? How many would willingly relinquish the right to make their own decisions, because, after all, their parents, their “good” parents, love them and want what’s best for them?

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  11. I have some questions as the guardianship issue was raised by the school at the last IEP meeting. I have been unable to sleep soundly since. If you obtain continued guardianship at 18 can it ever be undone? What are the pros and cons. My fears lay around my daughter’s vulnerability and while others that do not understand say I am being over-protective, well my argument is if she gets raped or abducted, well that is something I can never undo. Or my fear that if it was ever done it will follow her the rest of her life and even if undone that others may use that history later to try to take away her freedom when I am no longer here to protect her. We still have two years but either direction terrifies me. Her dream is to be a “voice actress” for animated movies or shows and there is a company that was on Kickstarter for a while that wants to do just that, offer Autistic voice actors for animation, so apparently my daughter is not the only one with this dream. I am ready and willing to move if necessary to help make this happen, as at this point I cannot see her living independently. Is there ever a right or wrong, it seems damned if you do damned if you don’t. I have tried to walk a fine balance of increasing indpendence while also ensuring nothing happens that can never be undone. On one hand I see no matter my functioning level I would not want someone else having complete control over me, but I also would not want to be left vulnerable and unprotected. I guess you also cannot ensure nothing bad will ever happen to any child, but there is a difference here. If someone talks to my child they are her newest Best Friend and she would do anything to please them, that strikes fear in me beyond anything else in my life. I feel this is the greatest challenge as a parent, to weigh this out and make the right decision, if there is a right one. At this point her wish is to never leave my side, and the “Mommy” in me finds some comfort in that, but also discomfort in “is that right or fair”. Is it best to let them fall or fail or soar inependently no matter the risks or to modify the risks? I find myself arguing with some that she is far more capable, talented, and independent than they seem able to comprehend and the next day arguing that someone is expecting too much and don’t understand the dangers. I am trying to follow her lead, while trying to build the necessary skills and independence that will be necessary for her happiness and security. Perhaps I do not know or understand the full meaning of guardianship at this point to make a decision. I have spent her entire life demanding of others that they set the bar higher, expect success, develop her talents, treat her fairly, accomodate for serious issues without treating her as a lesser, and because of that I simply cannot fathom as a parent, standing in front of a judge and telling them she is incapable of independent decision making or that she is somehow intellectually disabled even if there are issues. There seems no right answer. How the hell does anyone make this decison or is it even mine to make? Whether I do or do not this is literally tearing me up, we seem to be in that zone of the spectrum that does not make this an easy or simple decision. What is the law and what happens after? Does someone have a link to the legal explanations or people’s experiences good or bad?

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    1. Having read what you said, I advise that you become your daughter’s legal guardian, then allow her to make her own decisions as far as it is safe for her to do so, stepping in only when required. A guardianship grants you the ability to make decisions if you need to, it doesn’t compel you to make them. Of course, I say that as an Autistic person who isn’t under a guardianship, but who knows an averagely intelligent allistic who is.

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