Autism talks back [a rebuttal]

(Issuing a Content Advisory/Trigger Warning; ableism and pessimistic viewpoint of autism by one non-autistic parent (emphasized to indicate that I realize this is one parent, who doesn’t necessarily represent all, nor is this post meant to speak to all).  Includes quotations.)

Autism Awareness Month is winding down, and I’m getting ready to put my Extreme Warrior Face back on shelves for a while.  That doesn’t mean that I’m going to be a hypocrite and turn off my brain’s Advocacy app just because April is almost over; it just means that I probably won’t be quite as militant about it. 😉

This post may come across as a little more emotional than usual.

There’s a reason for that.  

My lovelies of the jury, it triggered me.

So naturally, I’m going to talk about it. 😉

As with all of my posts on this topic, this is meant only to whom it actually applies.  It’s not meant to be directed at anyone else.  Because so many parents are doing it right.  Yes, this definitely includes non-autistic parents.  Those of you who are open and loving and doing your best, are amazing.  This actually goes double for non-autistic parents of autistic children, because you’re doing this with little people whose neurotype differs from yours. ❤

With that said, here we go…

The first point of contention is that the article was written not by the person themselves, but by their parent, on a site that purports to feature firsthand accounts of long-term conditions. Even their Bipolar Disorder section  reveals an absence of stories written by other non-bipolar people.  And for it to be any other way would be unacceptable.

So, then, why are about 2/3 of their stories about autism written by non-autistic people, about autistic people?  If people experience a (conventionally-considered) mental illness like bipolar disorder  are routinely allowed to speak for themselves, why not autistic people?  Sometimes it almost seems like the world has been granted immunity, given a hall pass to shout right over us.

I’m certainly not saying that parents of autistic kids don’t have the right to speak.  

I’m not saying that they can’t write about their lives.  And I understand that a person’s children are a fundamental part of their lives.  And I understand (perhaps as well as anyone else) that if their child is on the Asperger’s/autism spectrum, then autism is a fundamental part of their child.

But as most of us on the Asperger’s/autism spectrum are already too well aware, autism is primarily (and some of us might say exclusively) the autistic person’s story to tell.  And too often, non-autistic people can be found in every cyber-book and cranny, talking over us, telling our story for us, way too frequently and with way too much one-sided negativity.

I came upon a story on the large, ever-popular website that professes to contain “real stories” by “real people” “with disabilities”.

And as I mentioned above, it triggered me.

It wasn’t a completely ugly sight, but it wasn’t a pretty one, either.

If people like this are going to write essays like that, I’m going to answer.  Today, I’m talking back.

I’m going to pick it apart and write a fractionated rebuttal.  I’ll quote the lines here for those who would rather not visit the site to see what my hubbub is all about.

Let’s take the first piece.

“Every time I sit down to write, I often already have a positive message to end on in mind. I don’t have that today. Today I am sad, I am angry and I am coming from a place that I don’t often go: a place with walls papered by self-pity and lighting dimmed by exhaustion.”  

(Emphasis mine.)

All I have to say about this section is, self-pity is right.  Emphasis on “self”.  Where’s the consideration for her child?

It’s OK to be sad.  It’s OK to be frustrated.  It’s OK to be angry.  That is a frequent effect of attempting to establish and maintain a bond with someone of a different neurotype.  It happens.

But my question is, what happens when her child sees this article?

And further, if this is how the parent is feeling, can they actually approach and interact with their child with openness and acceptance?  I’m guessing that it would be pretty tough to do so.

“After all, bloggers who have written more negatively about their children with autism are often scrutinized and demonized.”

As well they should be, especially if their negative thoughts and defeatist attitudes constitute the majority of their writing.

And as well they should be, for abusing the upper hand they enjoy in their family dynamic and the world at large.

I’ll explain…

Non-autistic people enjoy a favored status in the general world.  After all, they’re not autistic, and therefore, it is assumed that they’re not “abnormal” or “disordered”.  The world assumes that they’re of sound mind; they have no stigma attached to their names.  The world has no reason to take their words with grains of salt.  In short, people take them seriously.

Now let’s factor in the power differential that comes with the chasm between an adult and a child.  A minor child’s brain has not yet fully developed.  They may think or feel something, but might lack the vocabulary or self-awareness necessary for adequate self-expression.

The parent is a mature adult with all of that intact and fully manifested.  A child hasn’t reached that point yet.  (This applies to any child, regardless of their neurotype.)

It is for this reason that the words uttered by an adult are generally taken more seriously than those of a minor.  Society inherently believes that what an adult has to say is more worthy of attention.

Lastly, the parent(s) of the household make the rules.  If they want to use the computer, and there’s only one, the parent’s desires tend to rank higher than those of their children.

Normally these are good things.  Children need boundaries, and as much as they may protest when what they want to do butts up against the parameters set by the parent(s), they secretly want those rules in place.  Ultimately, they appreciate the fact that those rules exist.  Those rules, and the consistent enforcement thereof, help the child feel safer.  

(For a counter example of what happens when this isn’t the case, just take a look at kids from households in which there are little to no rules; they’re often angry children.  This is ultimately rooted in a chronic, low-level anxiety, due to not having parental guidance.)

My issue with all of this is not with household rules, mature development, or parental dominance.  Those actually exist to protect the child.  Rather, my beef lies in the misuse and abuse of the power differential.  The power differential is natural and healthy, so long as it’s not used in ways that could harm the child.  When that power differential ceases to protect the child, and could instead harm the child, that’s where I take issue.

When a parent laments in public cyberspace about the challenges of raising an autistic child, chances are really good that the child is not writing a blog post about their own side of the story.  They’re not lamenting, in turn, about the challenges of being misunderstood by their non-autistic parent.

If they were, then the autistic child’s writing might serve as an equalizer that balances the scales a little. 

But I don’t think that’s happening.

“Another reason I usually stay away from the negative: I don’t want my child (or others with autism) demonized or people to think any less of him.”

Except when your story ends up on The Mighty, for the whole world to see.  Honestly, lady, what do you think will come of this?  How are you letting anyone form any other impression of your son?  Are your more positive blog posts ending up on The Mighty, too, or just this one “rare” negative one?  Are you encouraging your child to tell their story and submit it to that site, too?  

I think not.

” ‘Of course we have our challenges’ or ‘And even though he struggles…’.  Anyone affected by autism knows those phrases are emotionally charged.”

(Emphasis mine.)

Well, first of all, the “affected by” jab says it all.  Tell us how you really feel (end semi-snark).

No one is “affected by” autism.  The proper wording is “those who interact with autistic people/children”.

I’m not exactly the Queen of Anti-Ableism.  But phrases like “affected by” are a touch strong.  It might seem like simple semantics, but let’s explore that point.

Good old Google has a helpful dictionary feature, which also includes synonyms.

Let’s look at a few synonyms for the verb “to affect”:

“synonyms: move, touch, make an impression on, hit (hard), tug at someone’s heartstrings; More

“upset, trouble, distress, disturb, agitate, shake (up); ‘he was visibly affected by the experience’ “

That indeed sounds pretty negative.  It gives the impression of trauma.  

Indeed, the word rose up from Latin to Late Middle English, when its meaning was established as “to attack, as a disease”.

Is autism really that traumatizing?  Does it really “disturb” people?  Does it actually induce agitation?  And does autism have a monopoly on that effect, or could it be said that there is often misunderstanding between people of different neurotypes?

My answer is a resounding NO to all of the autism-related questions, especially when a mutual understanding is reached between the two neurotypes.

Believe me, the challenges of interaction are bidirectional; neurotypical people aren’t “affected by” autism any greater than autistic people are “affected by” neurotypicality.

Interesting to think about, isn’t it?  (That’s a serious and rhetorical question, with no sarcasm or snark intended.)

In short, my neurological orientation is not a “disease”, nor does it “attack” me, or anyone else.

“If our children and their autism are so great and so gifted, why are autism parents so vocal about needing help and advocating for their children? Why would a savant be labeled “disabled” or need to receive special services from a school district?”

Because maybe, just maybe, the problem isn’t autism.  Maybe the problem lies with a bureaucratic, one-size-fits-all education model, which falls far short of serving unique individual children and their unique individual learning styles.

And maybe some of the problem lies with the small-but-vocal segment of one-size-fits-all parents, who assumed they had the right to assume who their child would turn out to be, and who cannot bend their minds to accept anything other.

And maybe it comes from a simplistic world that isn’t wise or enlightened enough to recognize or appreciate the gifts we have to offer.

Way to spin our advantages and positive traits into your own self-pity.

“Autism is a spectrum disorder. No two people on the spectrum are the same. Many of our children are not savants. Many of our children are not even on target with their development for their age. Many of our children will live with us for the rest of their lives.”

Yeah, and a larger percentage of us won’t live with our parents forever, too.  And since you haven’t crossed that bridge yet, how do you know either way?

And can we please dispense with the obsession with milestones?  I know they’re set by respected specialists and other authority figures, but they’re all human, and humans aren’t infallible.

Let children develop at their own pace, at least to a point.  Give them time to come into their own. Often, they will.

How do I know that?

Because I’ve talked with those who have been eerily similar to your child, and they’ve grown into autistic adults, and they’re fine.  I’m not saying that they have it easy (few, if any, of us do).  I’m also not saying that every autistic child will automatically be OK.  But I am saying that just because your child is the way they are now, doesn’t mean they’re destined to be a certain way forever.

“So, please, don’t tell me autism is a gift.”

It may not be your gift.  In fact, it isn’t.  It may (or may not) be your child’s gift.  We won’t know until he tells his own story.

It is, however, more likely to be a gift if that’s the message you send, and less likely to be a gift if that’s the message you send.  What you do and say now writes the early chapters of his book for life.

“When my child has been screaming every 30 minutes all day long and we have to go to the store and he screams at the checkout, the cashier telling me he’ll be OK and will be great with numbers when he grows up is not what I want to hear.”

But maybe it’s what you need to hear, my dear.  You have to give him that chance.  You have to give him that right.  You have to give him that room.  And you have to give him that support.

And by spending precious time writing articles like this, you’re giving up that time.  You’re paying more attention to the negative energy, which only reinforces it.  And it does so at the expense of the positive energy and constructive solutions.

And why is your kid screaming for 30 minutes anyway?  Kids don’t do that for no reason.  I’m an autistic adult, which means that I was once an autistic child, and I can assure you that I never screamed for no reason.  Every time I did, it’s because something was wrong.  Maybe the very situation of being in a grocery store is overwhelming.  Maybe the fluorescent lights above are flickering, over stimulating his nervous system, and he can’t tell you (hello alexithymia!).  Maybe he doesn’t feel well.  Maybe the solution is to stop dragging him into the store.  Have a neighbor watch him.

“When I look into my son’s eyes when he doesn’t understand his surroundings and his anxiety and fear are palpable, there’s nothing in this world I wouldn’t do to take that fear away.”

What is it about that environment that has him in such overload?  What about your home or your car or your everyday errands is so scary for him?

And trust me, I was a sensitive but resilient kid.  I had more problems with those environments when I was hungry, overtired, or stressed out by the accumulated events of the day.  There’s a reason for this phenomenon.  Find it.  Don’t stop until you do.

“Please don’t tell me his autism is a gift when I take his little sister to the hospital for a concussion resulting from an impulsive outburst he could not control.”

Again, you have serious, unresolved issues in your environment.  This is the home he has no choice but to exist in.

Don’t blame your son–or worse, autism itself–for your lack of detective skills or ability to provide a safe and stable space.  Not all autistic kids are like this, because not all parents are like this.

Autism isn’t the culprit here.  Neither is your son.  And I’m not saying that you are, either.  It’s something else. 

Kids don’t just give their siblings concussions.  Not “even” autistic kids.  We’re not violent by nature. In fact, the very term “autism” is derived from a meaning involving “OK with/preference for being alone”, and we’re not violent at all when left to our devices, without poking and prodding and carrying on about how we won’t make eye contact or live “up to” the rest of the (prematurely assumed) expectations.

If violence or sudden outbursts enter into the picture anywhere, it’s either a natural manifestation of the fight-or-flight response, during which your son sees no other option and is merely trying to protect himself from something he perceives to be a threat, or the issue is something else besides autism and you have a misdiagnosis on your hands.

“For me, autism is exhausting, and I feel like every minute of every day is spent trying to break my child free from the anxiety that consumes him.”

You can start, as I mentioned above, by getting off the computer and playing detective to try to analyze the situation.  From this article, I can tell two things:

that you have three small children and 

that you’re fairly emotional 

Either one of these factors alone can be overwhelming, and your household has both.  Even as a autistic adult, who can reason through what’s going on, I would not be able to spend much time at your house, let alone live in it 24/7 like your young son is forced to do.

It’s people like these who waste precious detective or child-bonding time by perpetuating stereotypes and fueling misconceptions about autism.

I’m not an authority figure on parenting.  But I’m a reasonably wise and cognizant human being who was once an autistic child.  And my imagination doesn’t suck. And it’s not like just because I don’t have kids of my own that I’m clueless about raising them.  At one point in time, I assumed I would have them.  I made room in my mind for them, playing the “what if” game and visualizing the scenario through to completion, using the countless nights and weekends spent caring for children of all ages, from newborn to 14.  So it’s not like I’m totally ignorant.  It’s not like I’m not allowed to call out a piece of incongruent logic and misdirected emotions, or speak out in protest against the traumatization of a child and point out that “you’re doing it wrong”.

I don’t like doing that, but if it’s necessary, then it’s necessary.

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20 Comments

  1. I find this rebuttal to be more problematic, insensitive and offensive than the original article. You could try having a bit more sympathy for the parents of autistic children. You only know what it’s like to be an autistic child. You do not know what it’s like to parent an autistic child so I’m not sure where you get off deciding that this mom is doing it wrong based on the limited information you have from this article and the assumptions you’re making. Maybe there are more non-autistic people writing about autism than non bipolar people writing about bipolar because autism tends to impair communication in a way that bipolar does not. Not everyone on the autism spectrum can communicate as well as you can. Maybe that mother doesn’t have the luxury of having a neighbor who’s willing to care for her autistic child while she goes grocery shopping. Autism is not just the autistic person’s story to tell. It has a profound affect on the lives of their loved ones as well, especially their parents.

    Liked by 2 people

    1. Thank you for sharing your thoughts 😊 My brain is pretty fried right now from a long week, but I think that if you see my reply to “snow is ok too”, that will explain things a little further 🌺

      Liked by 1 person

    2. As an autistic child myself, I actually have to agree with Laina here. My mom raised me (mostly) by herself, and rather than writing articles like this mom did, she took an active role in guiding my life on the spectrum. I’ve never screamed the way her child did, but did have some violent outbursts. Rather than take the all-too-overused train of self-pity, she removed the things that were distressing me and made my environment more welcome to my sensitivities. Raising a child on the spectrum takes work, maybe more work than a parent of a “normal” child would, but isn’t making a safe environment for your kids what a parent is already supposed to do? The mother here needs to recognize that her child is going to take more effort than what she’s currently putting out.

      Liked by 1 person

      1. You don’t know how much effort this mother is putting in. In terms of writing articles vs taking an active role in guiding a kid through life on the spectrum, it’s not a one or the other thing. You can write articles AND take an active role in your child’s life. Don’t judge someone until you’ve walked a mile in their shoes. You haven’t walked in a mile in this lady’s shoes. You know what it’s like to be an autistic child but unless you’ve raised an autistic child you don’t know what it’s like to be the parent of an autistic child. Instead of accusing this mother of indulging in self pity (and I think everyone does have the right to indulge in it every now and then) you could try having some compassion for someone who’s struggling to do the best they can in a very difficult situation.

        Like

        1. You’re right, I may not, but judging by what she has written, in my opinion she could be doing more. What she described were not strictly autism problems. Furthermore, while it may be her right to indulge in self pity it’s not helping her child or her situation.

          Liked by 1 person

          1. Actually I think ‘self pity,’ if that’s what you want to call what she’s doing by writing this article does have its uses. In order to take care of your child’s emotional needs you have to take care of your own emotional needs and letting out all the yucky, negative feelings you have can be cathartic. It might also help other parents who are in a similar situation and struggle with similar feelings. I think parents of autistic children have the same need to talk about their struggles and connect with other parents of autistic kids that people who are autistic themselves do. Again, it’s not a one or the other thing. She might cry “Woe is me!” for one hour of the day and then devote the other 23 hours to helping her kid because without that one hour pity party she wouldn’t have the energy or resources to devote the rest of the day to helping her kid.

            Liked by 1 person

  2. I can add a third possibility to the outburst… Ben sometimes is over enthusiastic in his play & doesn’t know his own strength💪. He has almost knocked me over running into me when I wasn’t expecting it. 😮😏
    All parenting can be difficult. Parenting a child that is upset or in pain or unhappy in general and not knowing how to make it better because the child can’t explain & you’ve tried everything you can think of, is extremely frustrating.😤 And heartbreaking.💔
    I didn’t read the original article so I can’t really comment on it.
    I had to leave that site. I was following Fibromyalgia stuff but it was too repetitive 😴
    💞🌻🌴💛😎😘

    Liked by 2 people

  3. Dear Laina, please know that my comments come from a place of deeply wanting to understand. I have been in positions where people have talked about me, and for me, and I felt silenced. Not my whole life, though, so while I do try to “get it,” I know I don’t have the first clue, but I’m trying very hard to get one (a clue, that is). As I’ve said before, I can only write from my own perspective.

    I do believe that my perspective is valuable, and can add to conversations about parenting: parenting a depressed and suicidal child, parenting someone who hasn’t learned how to process and express her emotions, parenting someone who may be autistic. I can add to these conversations because I do feel in tune with my child, and I’ve worked long and hard to “get *her*”. I can’t be inside her mind, therefore I can’t speak for her. But I can speak for me.

    I didn’t read the original article. However, I do know from your past writing that The Mighty contains several problematic components, and is something about which you feel very strongly. And so, what I’m about to say may be waaaay off, but is just a possibility. I’m wondering if perhaps *Part of* (not all of) the reason this article bothered you so much is because *that site* didn’t counter it with something positive. From what you’ve written, this particular author has stated that she is generally optimistic, and generally tries to see things positively. This once, she wrote a post about feeling down.

    You reacted to her words, and her tone. Perhaps rightly so; I’m new to terms like ableist language, and Nothing About Us Without Us — that’s all brand new to me, so I’m trying to learn.

    I do know, that, for example, my hours spent writing at the computer are when everyone is fast asleep at 4:00 a.m., because that’s when I have the most time. Or when the kids are at school, or when I’m supposed to be working. ( 🙂 ) It’s possible that she really does spend the time to try to figure out why her son is acting the way he is, and it’s possible that most of her time is spent trying to sort out how to help him. It’s also possible that she really doesn’t have a lot of other options than to take him to the grocery store. From the brief parts you quoted, from this parent’s perspective, it does sound like a lot of the time she is trying.

    When I write about my daughter, I also talk with her. She knows how and why I feel frustrated when I do, and she knows how and why that’s just a part of parenting. She knows when I feel sad, and she knows when I feel worry (not *all* the time, but in general). I believe that that is a part of a healthy parent-child relationship, that she knows I’m there for her no matter what, she knows that there *are* times in a person’s life when circumstances make you cry, and you deal. You learn to figure it out and move on. You have to learn how to manage life when it’s not your ideal of perfect. So I model that for her. I *also* talk with her about the joys, the wins, the good times, the parts of life that *are* perfect, so that she knows that life is a range of feelings, thoughts, emotions and experiences. She needs to know and learn that there will always be things to look forward to. All part of teaching a suicidal child that *everything* is solveable, *everything* is navigable. In turn, she learns to express to me the times when she feels I need to do better, try harder, if she feels I’ve let her down, or if she feels I’ve done something right.

    And so, just from my perspective, I personally would tend to approach this from a place of compassion, and while *my* first reactions to upsetting things tend to be hot-headed, I try to stand back and then figure out what the balance is.

    (In this particular instance, trying to find out what the balance is, is trying to learn about and appreciate your perspective, and understand that while my reaction is different than yours, your reaction is valid and you come at it from a different place than I do, which is obviously made up of very different experiences and emotions, and therefore you have reasons for your perspective that my experience has not yet showed me.)

    Liked by 5 people

    1. Exactly 😊. You nailed it, on so many excellent points ❤️

      When I’m triggered, I don’t necessarily use the best word choices. The “black and white thinking” phenomenon comes out, showing itself what is probably a bit too brashly 😊. I definitely hold the view I expressed, but once I’ve calmed down from the trigger, I realize that what I say isn’t always the whole story 💞

      There’s always a flip side 😊. I may not be the mother of a human child, but I have fur-kids who are the closest thing I’ll ever have to human kids. One is very old, and he has a benign thyroid tumor that makes his metabolism speed up – a lot. He is *always* hungry. The problem is, he eats too fast and then the food makes a second appearance on our carpet. So we’ve learned to space his (constant) feedings apart a little more. But that doesn’t stop him from meowing (constantly) the entire time. We become agitated. We know he can’t help it and we feel for him so much, but the way it is is the way it has to be, for his own good. But it nibbles away at our sanity, too. We’re not always the calmest people about all this. It’s hard for all of us. (Our kitty is otherwise very healthy and happy–it’s just the food part. He’s very affectionate and when he’s finally satiated, he’s relaxed and cuddly and he purrs all the time. He’s otherwise in really good shape.)

      So in an unusual way, I can relate. Crying for a half hour tugs at the heartstrings. There’s a feeling of hopelessness, not knowing what to do. Yep, I get that. And if Murphy could tell his own story, I’d certainly encourage him! 😉❤️

      So yep, I do see the flip side 😊. I do know what it’s like to try everything you know and have it come up short. I know what it’s like to have someone you can’t communicate with and reason with. Not that I’m implying that autistic people are like cats, of course. It’s just that I can imagine the situation. Having cared for lots of kids in my life, I can relate on the human child level, too 😊. That’s probably why I *didn’t* have any of my own 💖

      I can totally understand and respect that she’s trying.

      And I think you’re totally on to something with the idea that there’s no balance, or at least, insufficient balance.

      No other The Mighty condition category features (so many) stories written about the people with the condition by those who don’t. And yet, that’s 2/3 of The Mighty’s stories on autism. Once again autism is singled out, and autistic people are ignored and talked over. I know several people on the spectrum who have submitted their stories to that site, only to be rejected. And yet, so many negative stories are written about us, by people who aren’t among us. There’s no sense of justice and fairness. No equality.

      I would have been much happier if The Mighty wouldn’t have rejected the stories of autistic people in favor of yet more negative stories about autistic people by non-autistic writers.

      I would have been much happier and less triggered had the language not been so one-sided.

      I would have been much happier if stories like these didn’t cause society to say, “well, given what I know about autism, it’s no wonder why a parent would kill their autistic kid.” (I’m not implying that this particular woman would, but other parents have, and society gives them sympathy, created by and contributed to by stories like these, without a counter-point.)

      I would have been much happier if they featured more stories on the positive aspects.

      I would have been much happier if they had suggested some changes in order to make the story itself less inflammatory, because it was. She was all, “don’t tell me autism is a gift” as if those who believe it could be don’t have a right to that opinion (!)

      I would have been much happier if The Mighty would create a separate section for non-“affected” people of any of the conditions they list and leave the categories themselves exclusively for people who actually have those conditions.

      There’s so much potential for improvement here, but until it’s made, stereotypes get reinforced. Abuse and murder are sympathized with and fail to be prosecuted. Autistic people, real people, suffer.

      And the child in the article is suffering, too. But in that case, as is too often the case, nobody considers the trauma experienced by the child. (One doesn’t cry for a half hour without suffering and experiencing trauma.)

      You are absolutely amazing with your daughter! You rock. You’re doing it right 👏🏼👏🏼👏🏼😘❤️

      Liked by 1 person

  4. Content Advisory/Trigger Alert: The following may contain passages which some might find disturbing!

    As I’ve mentioned a few times in the past, I see the matter from a different angle, and therefore have a different perspective.
    In his “Autism and Asperger Syndrome”, Simon Baron-Cohen (pgs. 1-14, 2008) compares two individuals on the autistic spectrum, Jamie and Andrew both 19 years old; Jamie with what is known as “Classic (Low-functioning) Autism” and Andrew with “Asperger’s Syndrome”.
    I’m not going to debate the low/high terminology, nor quote all 14 pages, even though it would be more than beneficial, but mention that the diagnostic difference is given by the presence/absence of childhood language delay, and the presence/absence of Learning Deficiencies, which would leave Jamie with an IQ of 58, and Andrew with an IQ which took him through University.
    In order to clarify my position which is different of Laina’s, I will mention a few things, having to do with what Jamie’s family, but especially his mother has gone through at the time she provided the details for Baron-Cohen’s book:
    -all through childhood Jamie slept 2 hours per night, for the rest of the night running up and down in patterns
    -because of that, his mother had to book herself into hotels, in order to catch some sleep
    -he frequently still took off his clothes, no matter where he was, home, shop, bus
    -sometimes he undoes his flies and starts m******** in public without any embarrassment and needs to be restrained by his carer(s)
    -sometimes when frustrated, he bites the back of his own hand, drawing blood
    -occasionally he hugs his mother so tight, that she has to push him away, as he is not aware of his physical strength
    -on a crowded beach, if he sees something he wants, he will go for it, stepping over and even on people
    -once, in a kitchen showroom, he spotted a demonstration toilet, and before his mother could do anything, he d****** in it, leaving his mother utterly embarrassed as she had to explain the situation
    -not infrequently runs away from home
    -at the special school he attended, he oftentimes grabbed the glasses of a certain child, and threw the across the room, laughing out loud
    As one could imagine, these are only a few episodes from a probably much longer list of happenings.
    As a result, due to the stress of looking after Jamie, his parents divorced when he was 12, leaving him in his mother’s care. And I’ll quote the rest from the book, pg. 5:
    “Jamie’s mother remains single, and is on long-term antidepressants, as the periods when she has tried to live without them have left her at times suicidal. But she knows that Jamie depends so much on her that she has to find the will to live, for him.”
    Unfortunately, the book doesn’t give details of the mother’s emotional life over the years, but as a mental health professional I’ve witnessed enough clinically depressed people, in order to have an understanding of what hopeless desperation can cause, I’ve cared for suicidal people who wanted to end their lives just because they wanted to finally sleep…
    I understand that neither children, nor adults with classic autism have chosen who they are, and they should have clearly defined rights and protection, but I also have to understand that their parents haven’t chosen either the situation in which they’ve found themselves, and that their valid rights and expectations must be considered.
    There are countries where the social care net allows such parents to opt for having 24/7 carers for their autistic children, which gives them some control at least over their own lives. I know of professional carers caring for adults with classic autism in their own homes, which had to be relieved every night by hourly carers in order to be able to rest/sleep. But I’m not sure that every country has this care option.
    For the reasons above, and many similar ones, my understanding of the frustration honestly vented by the mother mentioned in Laina’s post is different, considering that the distress she mentions is genuine, being the cause of her reactions, which I feel therefore obliged to consider in a non-judgemental way.

    Liked by 4 people

    1. Wow, awesome info! Very good to know. Agreed! My brain is a bit fried from work right now, but I will try to write a better, fleshier response in a little while 😊❤️👏🏼

      Liked by 1 person

  5. There’s a difference between saying having autism is a gift and having an autistic child is a gift. I think only the individual with autism gets to decide the former and only the individual with an autistic child gets to decide the former. I can get why that woman in the article felt triggered by the cashier saying her kid would turn out just fine and be good with numbers and no, I don’t think it’s what she needed to hear. This woman knows her son better than the cashier does, she watches him struggle on a daily basis and it’s looking like there’s a good chance he won’t be fine and here’s this cashier who doesn’t know her son trying to comfort her with platitudes and stereotypes. I agree that balance is key in discussions about autism. It’s not good to frame it as a hopeless and devastating disorder but sometimes I think the discussions about it go too far in the opposite direction, where it’s framed as a wonderful gift and people get crucified when they talk about some of the difficult, awful aspects of it.

    Liked by 2 people

    1. I agree, I think people feel awkward and aren’t sure what to say when faced with something like that, so they say what they hope is acceptable. I think the intentions are genuine, but wording is everything. For the cashier to say that the child will turn out just fine, when they don’t know the child at all, definitely has trigger potential. There’s no certainty there. The mother knows her child lightyears beyond the cashier, although even the mom herself isn’t psychic, either. The truth is, no one knows for sure, not even the child, who knows themselves the best of anyone 😊. Only time will tell. I think to make a statement such as whether the child will or won’t end up living with his parents forever is premature and could even be a bit silly, since nobody’s got a crystal ball 😊. Second to the child, though, the mom knows her child the best, certainly more than a cashier who will interact with them for all of 2 minutes 😊

      Assumptions are hardly ever healthy or productive.

      Balance is definitely key. There’s even a great many people on the spectrum who don’t view their autism as any kind of gift. In fact, even when I say that autism *could* be considered a gift *at times*, this is a frequent point of contention that many within the spectrum community take issue with me about. My “part-time gift” philosophy is not exactly widely popular. Many agree with me, but quite a few don’t 😊

      And it really is, for me, only a part-time gift. It’s also a part-time disability (still speaking for myself here). I definitely have my days in which it’s one, the other, or even both. Sometimes it’s even both a disability and a gift at the same time. I try to present a balanced view, but anyone who combs back through this blog can easily see the difficulty I often experience. And a quick glance at the comments section shows just how common those situations are 😊. The more wistful or agonizing posts have also been much more Liked and commented on than those posts that say “autism rocks!” 😊. It’s just that way.

      I wouldn’t want to crucify anyone for sure. I simply found a lot of the language used in the story to be extremely inflammatory, almost as if this person were talking to us, although I may have been a little oversensitive (due to a well-established response to chronic bullying from others), and perhaps she was talking more to people such as the cashier in her story–well-meaning but misguided people who say the wrong things in an attempt to assuage their own awkwardness in the moment 💖

      Liked by 2 people

      1. I admire your willingness to try to see things from another perspective and to remain civil when responding to people who challenge your ideas. I see way too much aggression, sniping and personal attacks in the autism community from people who can’t handle disagreement or see things from another perspective. It makes me sad to see people who should be united in a common cause fighting amongst themselves.

        Liked by 5 people

        1. Thank you! 😊. Absolutely ❤️

          “I see way too much aggression, sniping, and personal attacks in the autism community…”

          Oh Lord yes! 👏🏼👏🏼. True that! I have some personal experience with that, without even trying (I swear I prefer to stay out of it, but opened my mouth to try to get everybody calmed down (in January of this year) and holy cow, it backfired on me 😳. I became one of the main targets after that (around the beginning of March). Since then, I’ve spent a lot less time on Twitter. It saddens me a lot that it even happened. It was so bloody unnecessary 💔

          Liked by 1 person

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