Susan's Blog

Tuesday, February 17, 2009

There’s More Than One Answer To These Questions

Here are questions I have, without many answers. Or, if I have the answers, I don’t feel ready to say them yet. When I was in grad school, I learned that just by asking a question, you reveal something about yourself. A question can be a statement.

I do not mean these questions to be statements, or objective in any way. They are just things I wonder about and have come across in all the interviews I have just finished doing for my book.

Do you think that the autism spectrum is too large? Do you feel that there are too many people being said to have autism? How do you feel about the terms “high functioning” and “low functioning?” If we hate the terms, do we also secretly hope that our kids are “HF?” Do many people refer to their kids as “LF?” Why would they?

Answers: Autism Spectrum: Some feel the spectrum is too large. Some people do not understand the many manifestations of autism. Some people would like to see different names, like maybe there is a gut disorder that has some autistic-like symptoms but when certain dietary changes are made, the gut issues go away along with the symptoms, but then these folks feel their child was “cured.”

Using LF: They would not rather use it. But if a parent is told their kid is “high functioning,” most likely they’ll use that designation, because there is a positive connotation. So if your child is LF, you are forced to come up with a different way of viewing him. That is a good thing, because LF is neurelitist. If you don’t know what these terms are, see me after class.

Have you ever thought about how all the terms used to describe autism spectrum set up a caste system ranging from lowest-functioning, “in their own world,” “severe,” to “high functioning,” “practically normal,” and stuff like that? How can a parent or a kid possibly feel good knowing that they are at the “bottom?” [not rhetorically asked]

Answer: They must come up with a new paradigm that describes themselves, and not listen to the pejorative labels.

How do you feel about the many people who are newly pregnant, who say to you: “I hope there is nothing wrong with my baby?” or “I hope he doesn’t have Down Syndrome.” I said it myself. But what that does is to set us up for an agonizing sense of failure and misery if we do get a child like that.

Answer: I felt shitty when people said to me that they essentially hoped their child was not like mine. Like I was supposed to understand and remain somewhere down here, alone with my misery. But we’re talking about my darling Nat, who has brought so much to this world. Nat Nat Nat!!!

Do you think it’s possible that there are more autistic people, i.e., the Spectrum actually IS bigger, because of evolution? Is there an evolutionary purpose, perhaps, to autism? [This topic, and the answer below, is something I came across in William Stillman’s writings.]

Answer: There may be an evolutionary change in our psyches brought about by autism. Think about how others are forced to understand difference, and take care of people in ways they never thought they would. Society will have to become more and more sensitized to difference, just as we have become more cognizant of civil rights. As more readily-communicative autistics move into mainstream society, there will be more and more access to different kinds of minds and ways of being, and — tough shit for the neurotypical, we will just have to figure out how to get along.

Is there some way that we as a society can overcome some of the negative language and attitudes? Is it possible, or is it actually the truth, that disability is undesirable? If disability is not undesirable, than should it be called something else? But isn’t that kind of PC, rather than getting at the true issue, which is seeing disability as a negative?

Answer: I don’t believe that changing the name of disability is the answer; I think that it may start with that (just like getting people to consider the harm of the word “retard”). But I do think that people, especially doctors and all others who are the first to diagnose, should be trained in how to tell the parents the truth without negative baggage.

Where do we draw our lines? Of course we don’t want our children to have issues that will give them pain or cause them to suffer. Issues that require surgery, let’s say, or shorten lifespan. Or is it more “desirable” to have a brain-typical child who doesn’t live beyond 10, than a long-lived child who struggles lifelong with developmental disability?

Answer: I don’t know.

But then we get into the nebulous areas. Is it okay to have a child whose academic capacities are “average?” Do any parents accept that, or do the blame the school system, or the I.Q. tests?

Answer: I blame the I.Q. tests for being too stupid to measure Nat’s true intelligence. I blame stupid society for seeing him as a drain, a burden, a huge cost, a mistake, a monster, brain-damaged. Who are they to judge him? Who doesn’t have something wrong with them, on the inside, on the outside? Be honest.

Let he who is without sin cast the first stone.


I have asked myself almost all of these exact questions. Especially since there are autistic adults in my circle of friends. That really forces you to examine your own beliefs and attitudes and prejudices when it comes to autism. I have near constant internal dilemmas and dialogues going on in my own head about these very questions. So many loaded topics, so few answers (if any).

— added by ASDmomNC on Tuesday, February 17, 2009 at 9:56 pm

When other parents learn that my son (who has autism) has a job in the community, they automatically assume he is high functioning. He is not. He receives excellent support from his job coach, and his employer and fellow employees are very patient. They are constantly learning something new about him.

Little by little, as the numbers increase and there is immersion into all aspects of society, I think attitudes and preconceived notions will change. When you really think about it, don’t we all have some trace of autism within us?

— added by Anonymous on Tuesday, February 17, 2009 at 11:51 pm

All those questions have come to my mind in some form or other in the last few years. Having Nick has forced us to redefine our whole belief system. What do we determine as handicapped? A few years ago I would have never dreamed that having a child with autism would bring so much joy. Of course there are hard days, but there are many more days that are wonderful. Nick has taught us all to unlock our inner autistic side and just go with it. There are many questions that may never be answered; and maybe they are not supposed to be.

— added by Amy on Wednesday, February 18, 2009 at 12:12 am

When disability is viewed as a natural state of being in humanity, of course you’d see having a child with a life long disability as being preferable to losing a child at 10 years old.

Who wouldn’t prefer a life of memories to 10 years worth?

— added by David McDonald on Wednesday, February 18, 2009 at 7:53 am

I hate, hate, hate the terms high functioning and low functioning. I mean, what does that mean, exactly? When people find out my son has autism I’ve had them ask me: “So, is he high functioning?” or “Where does he fall on the spectrum?” How the hell am I supposed to answer that? To me, just the fact that they would ask these questions tells me that they don’t have a clue about autism. So I always answer with a non-answer. What is WORSE in my opinion is when professionals use this kind of language. Any time someone has the nerve to label my son like that I already know they will be toxic.

— added by Christine on Wednesday, February 18, 2009 at 2:25 pm

I have never met Nat. But I feel he is incredible. I am sorry that people see him negatively. The world has yet to understand autistic folks. We appear normal, but on the inside we aren’t. But we are still people, deserving of the same respect and kindness that our typically functioning counterparts experience. I say this because I am on the spectrum too. It gets frustrating when people treat me bad and then when I try to explain why I do the things I do people get angry at me for talking about it too much. I can only imagine how Nat feels. But yes, I feel Nat is very valuable.

— added by amerihappy on Friday, February 20, 2009 at 9:49 am

I have been very upset over this story. I have a 16 year old son who has been aggressive in the past. Two years ago I put him on medicine to help. I resisted it for a long time but it was time. My heart breaks into for this boy and his family. What if that were my son. That thought haunts me. It makes me so sad that I can’t even think about it. I have to push it from my mind. I have searched the internet to find out what is happening with this boy. Is he still in jail. I emailed Autism Speaks about helping this family. I feel like I need to do something but what?

— added by Anonymous on Friday, February 20, 2009 at 10:54 pm

Anon —
I know you’re talking about Sky Walker, which was a different blog post, but I do know how you feel. I, too, wish there were something we could do. Hug your son, I guess.

— added by Susan Senator on Friday, February 20, 2009 at 11:56 pm

I think these are questions that we all consider as parents or people on the spectrum. I do so despise labeling everything and everyone obsessively as if it’s a game of my kids better than yours. We all have difficulties to face no matter where you fit into the spectrum. Jarrett’s dad used to annoy me when in the same sentence he would talk about Jarrett going to college and conclude it with a statement that he could work for his uncle’s landscaping business ( said in such a tone to convey that he felt that would be the only job Jarrett can ever get-trimmimg bushes and mowing grass for his uncle) and I wanted to ask which is it? Do you believe him capable of going to college and functioning alone with minimal support or do you see him as an albatross to be looked after and constantly monitored? Of course his answer is that he didn’t mean it like that. I try to be open minded in regard to Jarrett’s capabilities but it is hard when even his father passes judgement without even trying to help him..I think the fact that Dad flips back and forth is irritating..When Jarrett was first diagnosed he would tell people his son was real explanation beyond that..and had the nerve to be shocked when some women he would date would run the other way after he said that..then he wouldn’t say anything like he was ashamed of Jarrett’s autism..meetings at the beginning of the school year where he would say I don’t think he’s ready for this grade..towards the end of the year I don’t think he’s ready for the next grade The questions remain the same, the answers are different for everyone.

— added by cameramom on Tuesday, February 24, 2009 at 1:04 pm

Most of the questions you pose I think about too. The one question that I think the answer is clear: there are definitely more kids with autism. My child (with autism) is 5 and the school district is completely overwhelmed with the number of small children like my son- nonverbal, not toilet trained, very stimmy, aggressive, tantrums, chronically ill, self-injurious behaviors, runners (oh god do they go…). Susan, I'm telling you, it's crazy. This is not just expanding diagnostics or substitution- this is a real honest to goodness increase- of scary proportions.

I too object to the terms HFA or LF for that matter. How high functioning is someone who can't organize their life enough to maintain an apt or hold a job? And I don't mean that in a disparaging way- I mean it in the way that there are plenty of adults/children with autism who may look totally normal on the outside but still they need services, accommodations, or just some good old fashioned understanding.

For me a cure would be desirable. And I will continue to advocate for research to this end. Of course, I want services and supports, indeed my kid will need those his whole life. But I can assure you that there will be no services for him- there are just too many kids his age. He may be entitled to disability benefits, fape, housing- whatever- but if there are too many disabled people then there won't EVER be enough. This shift is already happening- my state just made huge cuts despite the leap in numbers. They cannot support this many.

As to the topic of "understanding" and acceptance: I am totally happy to respect a person's choices to see themselves or their child as "different" or fine just the way they are. How about respecting and accepting MY decision to see my child as disabled?
My son IS brain damaged. You may not want to hear that about your son, but that is the reality with my son, hard as it is to swallow. He didn't walk until he was nearly 2, he has been taught every minute skill that he possesses. Is he a great kid? Yep. Would I take away the disability if I could? Yes. I'd appreciate a little acceptance and openness to my feelings as well. I'm sure I'll get attacked up and down for posting this- that is exactly my point. We are all told to be okay with differences until those same people tell us our different opinions are wrong.

— added by Anonymous on Monday, January 25, 2010 at 4:58 pm

Most recent anon: I totally respect and accept your feelings here and I'm really glad you expressed yourself here. You make some excellent points, and I am happy to keep this conversation going!

— added by Susan Senator on Monday, January 25, 2010 at 5:05 pm

I'm in the minority camp here, too. My son has "high functioning" autism and I still consider him to be very disabled. Not only would I take it away from him if I could, but I pray that our next child IS neurotypical. I hope that a cure can be found, and I'm not ashamed to say that.

— added by Anonymous on Tuesday, January 26, 2010 at 12:49 pm

Please — I wish you would not feel the need to say you are not ashamed to want a cure. Sometimes I want a cure for Nat's autistic symptoms. I guess I always want a cure, actually. I just now emphasize a whole lot of different stuff, for my own sanity and my relationship with Nat. There is so much struggle in being an autism parent — I do not want to add to that in the least.

— added by Susan Senator on Tuesday, January 26, 2010 at 2:46 pm

There’s nothing wrong with wanting a cure for the autistic symptoms that cause your child suffering. People who insist that autists are just fine the way they are fail to acknowledge the struggles to communicate, the loneliness and the sensory issues.

— added by C.J. on Wednesday, August 18, 2010 at 6:52 pm

As I said, yes, yes, yes…

— added by Susan Senator on Wednesday, August 18, 2010 at 7:00 pm

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