"My Daughter Is a Gift, But Her Autism Is Not"

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Understood. I think. Down syndrome and Turner syndrome are caused by genetic defects but the individuals affected by these conditions are not "defective." To wish to alter their condition would be to fundamentally change the person, to not value the person. I believe the point made is then that the same is true for autism. While I can't/won't make an argument against that, my need to understand brings me to another point. Autism is less well understood and there sometimes (e.g., my daughter's case) no known chromosomal abnormality. There's a possibility I did something wrong, was exposed to too much of something bad, or that her stroke at birth is the cause. I do wish those things hadn't happened. If something preventable is making her feel like screaming, I wish that it could be cured. I hesitate with "cure," because I'm sure there's a genetic component, too, and I wouldn't want her "cured" of her genes and who she is supposed to be! So I suppose the Devil's advocate point I'm proposing is that some component of autism for some people is negative. And some component of autism for some people was caused by something preventable and it's natural for parents to wish that had not happened and I'll stretch to say to wish that that portion could be "cured." Still thinking about the comparisons to the author's afflictions.

I don't think there is anything wrong with teaching autistic children functional and adaptive skills, such as how to communicate with others, how to be polite, how to interact in different situations. That doesn't change who they are, but instead gives them skills that they can use to pursue what they want to do in life. This includes how to stop screaming or how not to start screaming in the first place, when something happens that would cause oneself to meltdown or scream. Learning to regulating one's emotions is an important skill, and having it doesn't change a person and I think makes a person feel more confident and capable than not having it.

At least there's no "bye-bye" within the soul of HiHello!

I, myself, believe that manifestations which are evidently distressing to the person with autism should be addressed. I don't think this sort of "intervention" would be tantamount to a "cure."

We have to make a concerted effort, in all interventions, not to eat at the "core essence" of the person with autism. I, myself, am a product of considerable intervention aimed at "normalizing me." I believe benefits were obtained; however, I often wonder whether my "essence" was taken away by these interventions. Maybe I could have had an "autistic viewpoint" on something--and, thus, able to "do a Temple Grandin," and invent something quite useful--this "invention" only possible because of the "autistic viewpoint."

While I am not certain what an "autistic viewpoint" is, I can definitely relate to my parents trying to "normalize" me.

All I do know is that my Mom was a saint, to put up with me. If there was a drug back then to "fix" me, she would have given it to me in a heartbeat.

Sometimes people do these things, and since I could not read the OP's mind, that is why I asked for clarification.

I thank you for posting back with clarification. I don't know about other people, but it helps when people post a small explanation of what the objective of the post is when they post a news item, when it is is something controversial because I don't know how to respond otherwise.

I think there is a line between helping your child survive and be happy in this world and trying to make an autistic kid become NT, which is a fool's errand at this point, regardless of any other issues surrounding it.

To me a curebie is someone who believes it is possible to make an autistic kid NT because they -have to- believe it. They will try dangerous unscientific cures, because to them anything is worth the risk.

This is a messy topic because some kids are so severe that their parents are in such pain, that they cannot see anything other than this.

On the other side, there are people who want to embrace every aspect of autism, and refuse to acknowledge the many challenges inherent with being or raising an autistic child.

Then this is where the backlash begins because parents feel that they cannot vent, criticize or openly discuss these challenges because they are afraid of looking bigoted.

So, this is why I am wary when these kinds of things are posted, not because I don't think there is room for the discussion, but sometimes it turns into something unpleasant due to these different perspectives.

Adults who were diagnosed as children tend to have a variety of concerns. Some think they had too much intervention. Some think they did not have enough. I have no idea for any individual case. Even with my own child, I make the best decisions I can and cross my fingers that we did the best thing.

I was lucky in that no one tried to normalize me when I was growing up.
People went out of their way to let me be who I am.

Hi Rocket.

An example of an "autistic mindset": Temple Grandin was able, through her perseverance and her ability at discerning subtle angles visually, to invent a humane way to vaccinate farm animals.

Got it. So, I have always liked the way Dr. Grandin described her thinking style. In one of her books, Dr. Grandin writes: “All my thinking is bottom-up instead of top-down. I find lots of little details and put them together to form concepts and theories”.

This quote really resonates with me. As it describes my processing style exactly. Though...is this a “mindset” or is this a “processing style”? I had always assumed this was my natural “processing style” due to my tendency to be exceptionally -- obsessively??? -- detailed oriented and focus first on the details.

Two comments:
#1 - From my personal experience, any attempts to “normalize” me haven’t affected this “processing style”. It’s part of the way my brain functions and it impacts every aspect of how I interact with the world and with others.
#2 – Up until just several years ago, I thought everyone had a similar processing style. I was constantly confused when people could not envision the world the same way I did.

I wish I could recommend the book 'The Power of Neurodiversity' by Thomas Armstrong, phd, to the writer of the article. There are many segments in the book in which he explains that neurodiversity 'is not a Polyanna philosophy'. E.g., Armstrong writes, 'I am not attempting to sidestep the damage that these conditions do. I am not saying that these really aren't disorders or that somehow calling them 'differences' will make all the pain go away'. It won't. But there is merit in focusing on the positives. The term Neurodiversity is not a sentimental ploy to help people 'feel good' about their disorders. Rather, it is a powerful concept, backed by substantial research from brain science, evolutionary psychology, anthropology, and other fields, and can help revolutionize the way we look at mental illness'. (note: the illness is probably used here because he talks about depression, bipolar, schizophrenia, etc as well)

The importance of the concept of neurodiversity imo is:

- Separating the autism / other neurological condition from the disabilities

This because people need to start looking at people as people, instead of walking & talking diagnoses. That would not only be empowering to the people with neurodivergent braintypes, but would also change the 'one size fits all' approach we all encounter sooner or later. Therapists, teachers, counselors, need to get this. Sending a kid out to get a Dx will not change the problems you have with that kid in the classroom/house/workplace. It is a starting point to map the specific problems that person is having, but you will still have to go to the trouble of getting to know that person and implementing specific strategies. Not, e.g., putting up some icons on the school yard and then be surprised that 'the kid's behaviour is still problematic' (my own experience).

- Learning the importance of niche making & accommodation

People with divergent neurotypes and/or disabilities can thrive when they are in a niche that fits their needs and accepts their identity. This implies (!) providing necessary accommodation and resources. Niche making is considered an evolutionary trait as important as adaption by some scientists. 'Survival of the fittest' doesn't mean people who can't survive without accommodation are evolutionary weak. Accommodation is part of the survival.
There are companies who are starting to get this; e.g. I've read that Microsoft even puts a 'quality' label on their software saying it 'has been tested buy people on the autistic spectrum'. No elaboration necessary, this is awesome and the way to go. Then again, not every Aspie wants, or needs to be, a software tester. Hence the 'no one size fits all'.

-Not separating the condition from the identity

I learned this from the deaf community. FIrst time I heard about deaf parents not choosing for cochlear implants, I couldn't understand. I read, I listened, I learned, and now I understand.
Autism is pervasive, it can't be separated from the person's being. Treat the autism as a demon, and you're left with the perspective of fighting an elusive demon for the rest of your live. Treat it as a divergent brain type, you have the prospect of living a life that will be challenging on certain levels, but that offers possibilities and promises as well. Identities united form cultures; cultures give people a feeling of belonging, acceptance and value (cfr Maslow's pyramid of needs).

- Self-advocacy is a must

Teaching kids from a young age their neurological condition is not a wildcard for them, or for other people to exclude them, is crucial imo. The neurodiversity movement has been an instigator and a facilitator for this. Sad truth is you can't just sit and wait until someone is willing to give you a chance. You have to stand up and ask/demand. Better have someone have your back when you do.
I won't always be there for my kid, so I'll be very happy to know there is an active community that looks out for the needs of the people on the spectrum, not because they feel sorry for him/them, but because they value him as someone from 'their tribe' and will continue to fight for acceptance, respect and equality.
Without a neurodiversity movement, all that remains are therapists and professionals, who are sometimes very adept, but they're not advocates, or 'fellow tribe members'. They do their job: helping people to adapt to society. But who helps society adapt to our kids? Those two sentences uttered at IEP meetings never made a profound change in the mindset of my kid's teachers. Their acceptance and understanding has a -understandable- limit.

So I excuse the sometimes harsh and unnecessary criticism by neurodiversity advocates on parents who just want to help their kids. These advocates are fighting for a place in society, for my kid as well, and I will shake of any hurt feelings from my part, since their collective legacy will well outlive mine.

There's some elaboration necessary for me. I don't get what that label is supposed to mean.

I think that's a really interesting correlation to the Deaf community. I understand (as best I can as a hearing person with little connection to the HoH/Deaf community around me) why some Deaf parents would choose not to get cochlear implants for their Deaf child. The parents might be successful in Deaf and hearing circles, and be immersed in a supportive Deaf community. I also understand the perspective of parents who choose cochlear implants to help normalize their children and to make all of their lives easier in a hearing-dominated world. Interestingly, bringing up this point about cochlear implants actually makes me MORE sympathetic to NT parents of autistic children living in a NT world who hope to cure their autism. (For what it's worth, I imagine I'd choose sign over CI for deafness, and helpful therapies over a hypothetical cure for autism. In either case, the afflicted individual would still be "different.")

Sorry. Microsoft is one of the companies that hires people on the spectrum for software testing, not as a social program, but because they are better testers than NT testers. And according to my friend who has a Phd in computer science, software testing is the achilles' heel of many software companies.
http://www.computerweekly.com/news/2240 ... re-testing
http://www.spiegel.de/international/ger ... 01230.html

Haven't found the label, though. Might have been an exaggeration in the book. And also, maybe a little too weird.

I don't agree with everything in the book, but it's worth a read. Especially because I don't think I did a good job explaining. .

This is exactly what I've been trying to get the staff at my son's school to understand. Because even though they would never admit it, they certainly do treat him as though he is a "problem" that needs to be "solved". And they devote a lot of time & paperwork to this "problem". And maybe I sound like a jerk, because I know a lot of parents have to fight really hard to get school staff to devote ANY time to it. But signing up for the help means signing up for all the ignorance too. And it's very hard to work with that, because even though I would never deny that he has some behaviors that are problematic in that environment, it's just way too easy for people on the outside to fall into that condescending mind-set that everything BAD he does is because of his "disability" and anything GOOD he does is in spite of it. Instead of him being allowed to just be seen as a human being who is very complex and does some "bad" things because he's a kid, just like all the other kids are naughty sometimes because they are kids. But when my kid does something naughty, it's a symptom of the "problem", and there are meetings called, and a flurry of activity to come up with new "strategies" to address the behavior. On the flip side, when my kid does something good (scores well on an exam, makes a friend, participates in a non-preferred activity) they all pat themselves on the back and talk about how the "strategies" are working (to help him succeed in spite of the pitiable cards he was dealt). It's never because, perhaps, he's maturing. Or he was in a good mood that day. Or whatever, EVERYTHING is about his autism.

Whereas outside of school, he's just... HIM. And his autism is a part of who he is, but it's not "good" or "bad" -- it just is.

The well-intentioned attitude at school is the type where, if they could flip a switch and suck the "autism" out of him, they'd want to do that, because they assume that everything "bad" about him would melt away and all the good stuff would remain. And that's just so simplistic and wrong.

It makes me nuts, how much attention and focus there is on every move he makes. And sure, some of it is good-- he *is* getting help figuring out some things that I'm sure *I* would have benefitted from, too, at an young age... like learning how to recognize and deal with perfectionism and binary thinking. I can see that he's getting some specific "tools" that may really help him go further, and sooner, with his amazing potential that he would otherwise, because some of those frustrations can be really limiting. And those types of tools don't do anything, that I can see, to "take away" from the really AWESOME aspects of his different wiring. So I'm happy about that. But it feels like you can't have one without the other-- you can't say "okay I want that help, those accommodations" without signing up for the full ride, the label, the identity of being the "disabled kid" (and all the condescension that goes along with that), who will always be suspect, always be viewed as somewhat of a pain in the a$$ because he doesn't slide into the One-Size-Fits-All slot at places like school. And I worry a LOT about what all of that is doing to his SELF-indentity. And I suspect that by the time he's realized what it's done, if it's not a good thing, it will be pretty hard to undo the damage. Not impossible, but a lot of work.

ALL OF THAT SAID, I *do* get that parents who have kids who seem to really be suffering needlessly because of behaviors or issues related to the autism might feel compelled to consider whether they'd flip that switch. I can't say whether I would, because that's not my situation. My son is a gift, and his autism is part of that gift. But that's OUR truth, and I wouldn't expect another parent to have the same perspective just because their child has the same BROAD label on this hugely diverse spectrum.

I have not seen any neurodiversity activists who are against all efforts to help an autistic kid function better. That seems to be just a strawman/misinterpretation thrown out by people who think any attempt to teach a developmentally disabled child a useful skill automatically counts as 'therapy'.

Some neurodiversity activists oppose certain types of treatments, because they argue that problematic aspects of those treatments can be harmful to the children receiving the treatment. For example, ABA, if it involves too much focus on harmless-but-weird behavior as opposed to genuine behavior problems or teachable skills, it can send the message that the child is not acceptable unless he/she fakes normal. In addition, some ABA therapists try to eliminate autistic behavior that serves a valuable purpose for the child, such as stress-relieving stimming or avoiding eye contact because they find it painful. Obviously, a therapy that encourages a child to do an activity they find painful, or not do an activity that helps them function better, can be problematic - a bit like trying to force a blind child not to reach out and touch everything, or forcing a child with malformed hands to wear shoes instead of using her feet to grab things.

But if you are teaching the child something they truly would benefit from knowing, or trying to treat a behavior that is truly causing problems rather than just looking unusual, no one seriously thinks that shouldn't be allowed. For example, trying to help a nonverbal child get a reliable and functional communication system, or trying to get a child to stop self-injuring, or things like that - pretty much everyone agrees those are valuable goals, whether or not you want to cure autism.

HiHello, please don't ever feel bad or guilty about trying to help your daughter learn to cope better or to learn to regulate her emotions better. There is no roadmap or how-to book with autism (of all different degrees and levels). We are all just parents that want to do what we can to make our children's life better. I think there is a balancing act that goes on between trying to improve the symptoms and acceptance of the condition.

When I saw the title of the article written, it touched me because that is exactly the same thought I have had about my son's autism. I have read many articles or heard people speak about autism being a gift, and I am sure it is to those who have learned to be able to live their life with it and to succeed and to feel good about their lives. But there are also many downsides to it which are evident in all of these posts that I read on WP. So, I do see my son as a gift, but I have not gotten to the point of being able to call his autism a gift.

I would never embrace any type of treatment of therapy that would cause any harm to him. But if there is something I can try that will help him learn to be able to function in this world, you bet, I am going to try if it is possible. I don't think anyone can fault us for that.