Thanking the folks who are reaching out #WAAD

by Ingrid Robeyns on April 2, 2015

It’s World Autism Awareness Day (WAAD). The Independent has a very accessible piece debunking 5 myths regarding autistic people; it takes only two minutes to read. The piece also reports that in the UK 87% of people living with autism think the public has a bad understanding of the condition.

While my family has also come across a lot of ignorance over the years – some of which hurt badly – there are also wonderful strangers who have restored faith in what is possible. So, I want to dedicate a post to those people who are reaching out to people with autism, and tell them how important it is what they do.

As long-time readers of this blog now, my oldest son has autism/is autistic*. About a year ago, he started to develop a strong interest in flower decorations. Luckily we have a little garden with lots of green and some colored flowers, so he collects what he finds there, and what he finds in parks and woods, which he then uses to make creative pieces. He loves watching clips on YouTube by flower artists (as I call them), and combines what he sees there with his own ideas.
Flowers
Not only is he extremely lucky that I have a sister who, as a hobby, gives workshops working with flowers, but my son by now also knows all the flower shops in our neighborhood. In the beginning I held my breath how those shop owners and florists would react to his insistent and detailed questioning and the somewhat unusual requests he puts to them. But they have been absolutely wonderful. They are loving, patient, and are giving him all sorts of stuff that they no longer need. My husband often goes shopping in a supermarket where next-door is a florist; and the florist is happy to have our son in the shop while my husband does the shopping. In fact, that florist has now told our son that if he passes by at Saturday at closing time, he gets all the flowers that haven’t been sold that week (and that he can’t keep till the next working day). The first time my son went there at Saturday 5 pm, he was over the moon; and so were his parents, delighted at the kindness of strangers.

None of these florists are our friends of acquaintances, and we weren’t even regular customers. They have simply seen a boy with a strong interest, and are reaching out to let this special boy flourish.

Florists of Utrecht: thank you!

I hope that other autistic people and parents of children with autism have similar experiences. The world isn’t autifriendly, but individuals can make a difference.
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*people on the spectrum have different views on whether the right thing to say is “a person who has autism” of “an autistic person”. I have heard good arguments for both positions, and haven’t yet been able to make up my mind which position I endorse. Hence, in this post, I use both terms interchangeably.

{ 32 comments }

1

Z 04.02.15 at 11:13 am

What a beautiful and heartwarming story! Next time, I’m in Utrecht, I’m buying a large bouquet, just because.

Later in the day, I’ll ask a question about the autistic spectrum. One I’ve had, well probably since your post on the same topic last year. But for the moment, I’m enjoying the thoughts of a child arranging flowers.

2

Shatterface 04.02.15 at 11:20 am

*people on the spectrum have different views on whether the right thing to say is “a person who has autism” of “an autistic person”

Speaking as an Aspie, ‘on the spectrum’ works fine. ‘Autistic person’ puts the condition before the person but ‘person with autism’ sounds like there’s a ‘person’ with autism laid on too of that.

I mean a ‘person with a broken leg’ desribes someone who’s identity is seperate from, or prior to, the broken leg. That’s not the case with autism: it’s part of who we are. You wouldn’t say ‘a person with deafness’ or ‘a person with homosexuality’.

3

Trader Joe 04.02.15 at 11:35 am

I have no doubt that this will be the most wonderful thing I will read all day…maybe all week – Thank You for sharing.

As Z says, it makes me want to reward the kindness of strangers so not being in Utrecht I’ll find someone locally who is just as deserving.

Finally, congratulations to your son. There is nothing greater than finding a passion and pursuing it vigorously.

4

Lynne 04.02.15 at 12:48 pm

Thank you for this, Ingrid. I just love thinking about your son and his flowers, and how he has made friends by loving flowers. How old is he, if you don’t mind saying? (Just ignore if you prefer to be vague).

5

Philip 04.02.15 at 12:55 pm

Shatterface, people would say someone who is deaf or gay and someone who is autistic sounds okay to me. ‘On the spectrum’ has the problem of not being a great metaphor for describing autism. When Ingrid mentioned the idea of it being like a puzzle with some people having more pieces (traits) than others that was more useful for me.

6

MPAVictoria 04.02.15 at 1:15 pm

You are making me cry here Ingrid. What Lynne said.

7

Doug K 04.02.15 at 3:37 pm

thank you Ingrid, that is lovely..

8

Sus. 04.02.15 at 3:43 pm

Thanks for sharing this. As someone who has become close to a couple with two severely autistic children, I’ve only recently come to realize how important those who interact with their children are to both the children and their parents. I’ve also learned what a blessing milestones, such as your son developing an independent and deep interest in flowers, are for the whole family. My friend’s older son has developed a keen interest in photography and is improving steadily. It’s heartwarming that those shop owners near you are so supportive. (The photo is lovely, too)

9

Rich Puchalsky 04.02.15 at 3:46 pm

As someone with a high functioning autistic child, I’d like to specially unthank everyone on CT who uses “autistic” as an adjective meaning “greedy” or “not thinking about others enough” or “comments in a way that I don’t like.” You did your own little bit, and you should feel something about it.

10

js. 04.02.15 at 3:51 pm

As others have said, this is lovely. Thank you.

And as someone who doesn’t know tons about autism, I’m clicking on the Independent article forthwith.

11

vasi 04.02.15 at 4:05 pm

Thanks for the lovely story, Ingrid. I hope you don’t mind if I ask a question about that article on autism myths. What does it mean to say that autism is not a “mental health condition”? I wasn’t aware of this distinction between mental health conditions and developmental conditions.

Thanks!

12

SusanC 04.02.15 at 5:21 pm

@Phillip: I’ve heard a number of people with autistic spectrum conditions really object to the “puzzle” metaphor.

Part of the problem with it is that it kind of implies an outsiders view of the condition: that the people speaking (and using the “puzzle” metaphor) find those “other people” (those with autism) to be strange and puzzling. Whereas, if you’re someone who actually has the condition, it’s not puzzling at all: its just how things are for you. If you acknowledge that some of the people taking part in the discussion might have the condition themselves, the metaphor is a bit problematic.

13

ragweed 04.02.15 at 5:29 pm

Thank you for the great story and I hope that you and your son continue to find compassionate and caring people around you that can cherish your son for all that he is.

@11 – my understanding is that it is something of a semantic distinction. The DSM V categorizes autism spectrum as within the neurodevelopmental disorders, which also includes intellectual disabilities, motor disorders, communication disorders, learning disorders, etc. This would be contrasting to other major categories of mental illness such as Psychotic Disorders, Anxiety Disorders, Bipolar and Related Disorders, etc.

The distinction the article is trying to make is that people with Autism have a distinct neurological difference that does not correspond with other mental disorders. It is comparable in some ways to a sensory disability like blindness or deafness. Someone who is blind or deaf may be of very high intelligence or very low intelligence, and may be completely free of any form of mental illness, or may have bipolar disorder or depression, or any of a number of other disorders. All of that is largely unrelated to the fact that they are blind or deaf.

Autism is generally considered to be a set of neurological differences that are organic and permanent. They are not like anxiety or depressive disorders that have a possibility of being “cured”, nor like Bipolar or Schizophrenia that can be at least partly treated with medication that can control the worst and most debilitating symptoms. Nor does autism typically correspond to any intellectual disabilities – as autistic people range from very high cognitive capabilities to very low. “Treatment” for autism usually involves some combination of sensory-integration work, social-skills training, and adaptation. The solution to autism is more about developing a society that can accept and adapt to autistic individuals, and to recognize autistic people as individuals with their unique gifts, rather than some form of treatment to make them no longer autistic.

14

SusanC 04.02.15 at 5:34 pm

I thought the article in the Independent was mostly OK.

I think I get the spirit of what they’re trying to say by saying it’s not a “mental health condition” even if it makes no sense if pause to think to think about it. Autism Spectrum Disorder is in the DSM-V, which kind of makes it a mental health condition by definition, particularly if you’re a bit of a nominalist about the DSM (e.g you think that the conditions it identifies do not necessarily have anything in common with each other apart from being listed in the DSM-V). Perhaps that’s what the Independent article is trying to say (“Sure, it’s described in the same encyclopedia as schizophrenia, depression etc., but apart from that it doesn’t have much in common with them.”)

P.S. yes, I know, some countries don’t use the DSM for their diagnostic criteria, e.g. using ICD instead.

15

Philip 04.02.15 at 5:55 pm

@SusanC, I can see that too. For me the idea of the spectrum positions people in a specific place. Whereas with the pieces of a puzzle idea it shows how people can be more or less autistic but gives an idea of the individuality and complexity of the combination of traits. I suppose the problem is no metaphor can properly describe autism and what is needed is simply a better and wider understanding of it.

16

Bruce Baugh 04.02.15 at 7:13 pm

I share Rich’s anger at the use of “autistic” to describe chosen, calculated moral blindness and destruction of empathy. (I originally wrote “loss”, but this isn’t about people who misplaced something; it’s about people who’ve worked hard to sever their sense of connection to and sympathy with others.)

I’m guilty of doing it in the past myself. I didn’t get a clue until an autistic friend had to stop and point it out to me. So some of this is anger at my own my callous lack of attention until it became personal, a quality I criticize in others and see no reason to exempt myself from it. I should have known better – I should have cared better – then, and so should people doing it now. Rich, I’m sorry I was part of the problem for so long

17

Main Street Muse 04.02.15 at 8:03 pm

“In fact, that florist has now told our son that if he passes by at Saturday at closing time, he gets all the flowers that haven’t been sold that week (and that he can’t keep till the next working day). The first time my son went there at Saturday 5 pm, he was over the moon; and so were his parents, delighted at the kindness of strangers.”

What a lovely story!

Does anyone have any ideas on the growth in numbers of those on the spectrum? Are we simply defining the issue differently – casting a wider net? Or do you feel the numbers are increasing (they seem to be increasing at an alarming rate – but I am not immersed in this issue.) I realize this is not the point of the OP, but it is something I’d like to understand better, so thought I’d ask this group.

18

JanieM 04.02.15 at 8:33 pm

When I was a little kid in Catholic school in the 1950s, we always had a “May altar” in the classroom to honor the Blessed Virgin Mary, whose month was May. There was a boy in my class who loved to be the one to keep the May altar well-stocked, and I still remember the wonderful scent of lilacs in those classrooms in the spring.

This of course wasn’t considered a “boy” kind of thing to do, but my classmate loved flowers too much to care what anyone thought about it. He grew up to be a florist with a business that thrives to this day.

As an incurable dilettante, I treasure stories of people who know what they love, and go for it. This one is extra special!

19

Bruce Baugh 04.02.15 at 8:57 pm

Main Street Muse, autistic friends who’ve been studying available research seem to generally feel that the underlying rate of being on the spectrum isn’t increasing much at all. There are several other things contributing:

* Awareness of life on the spectrum as a thing, that is not simple wickedness, or developmental retardation, or depression, or anything else. Differentiating autistic life from all of those is an ongoing process, and one that lets us look back and say “oh, yeah, that was probably this” the way we can do with people who were like transgendered, and so on.

* Treatment of things that might get confused with being on the spectrum, like the consequences of malnutrition and toxic childhood environmental conditions. In this it’s kind of like people not dying from a lot of things and therefore living long enough to develop cancer or conditions associated with old age.

20

PJW 04.02.15 at 11:46 pm

We had two autistic children come to our house a few times this past winter to help give their mother some free time. They are brothers and came over separately on a couple of Saturday afternoons. The youngest, 8, liked to paint pictures of flowers, while the other boy, 13, was interested in water towers, so we drove him to all of the water towers in town, thevyoungster giving me driving directions to the sites which he had mapped out exquisitely by hand and also which he wanted me to drive to in a specific order. It was a nice experience, especially after we all got more comfortable with each other as the day wore on. We hope to have them back.

21

Main Street Muse 04.02.15 at 11:54 pm

To Bruce Baugh @19 – so the CDC rates that show 1 in 150 children born in 1992 with autism compared to 1 in 68 children born in 2002 with autism – those changes in rates are just an expansion of the definition – not an increase at all? http://www.cdc.gov/ncbddd/autism/data.html

22

Bruce Baugh 04.03.15 at 1:33 am

Main Street Muse, I I have no idea – I’m passing along a summary of what I recall hearing from others. I haven’t had the free energy to really look into it myself. But I think they’d say less “expansion of the definition” and more “better diagnosis”.

23

Atticus Dogsbody 04.03.15 at 2:21 am

UK 87% of people living with autism think the public has a bad understanding of the condition.

And they’re probably not far wrong. At age 40, when I was going through the soul destroying task of finding out I’m an ADDer, a helpful lady from the Salvo’s got me to read up about Asperger’s, autism, bi-polar, ocd, etc and I realized I knew sweet bugger all about any of them. I also learned that at least two GP’s, a psychiatrist and a neuro-psychologist I went to for help knew sweet bugger all about ADD and that made me wonder how much of the medical community are screwing over people that need help.

24

Atticus Dogsbody 04.03.15 at 3:43 am

I should point out that I’m in Oz not the UK.

25

Val 04.03.15 at 7:11 am

Thank you so much Ingrid, that was a beautiful story. I love arranging flowers too, and it is wonderful to hear of your son deriving so much happiness from it.

26

MT 04.03.15 at 9:04 am

I believe I do not know enough to give arguments or make sweeping claims about autism but it’s very striking how spending time with an autistic person is so eye-opening about how completely distorting the information is that is out there about autism. There are just so many cool people who have autism–I hate to say that the fact they have autism makes them so incredible because of course they are individuals. But sadly this is something that many people do not know–that possibly the most insightful, loving, funny, honest, talented person you could meet may also have autism. Or maybe they won’t have all those characteristics but they’ll just be someone you could potentially connect with and truly like. Everything you read about autism would prime you to not see this. So much ‘information’ about autism is actually misinformation.

I also love all the people who have been so kind to an autistic person in my family–she truly has a community and she creates community around her like no one I’ve ever met before. She does it much like your son–by following her passions. And people respond in a very good way most of the time and she’s managed to bring so many people into her life because of her curiosity and creativity as a person. But she experiences frequent unkindness and stupidity and outright cruelty from strangers as she goes about her life. People are sometimes totally awful to her on public transport and in public space. It’s horrifying the things they will say. They may not be responding to her autism–they just know she is different somehow and they lash out. They do this to a person who is wildly empathetic to others, accepting of many differences and who has never lashed out at anyone, ever. So you really have to ask yourself who is the ‘normal’ person here.

27

Shatterface 04.03.15 at 12:34 pm

Philip 04.02.15 at 5:55 pm
@SusanC, I can see that too. For me the idea of the spectrum positions people in a specific place. Whereas with the pieces of a puzzle idea it shows how people can be more or less autistic but gives an idea of the individuality and complexity of the combination of traits. I suppose the problem is no metaphor can properly describe autism and what is needed is simply a better and wider understanding of it.

The difference between the puzzle mataphor and the spectrum is that the puzzle implies I have something missing whereas everyone is somewhere on the spectrum – only most people are at the neurotypical end.

On the argument that autism is a mental illness because it’s in DSM; well so was homosexuality; gender identity disorder still is. Most liberals now accept that sexual orientation and gender identity are complex these days.

As to using ‘autistic’ as an insult, well yes, that’s annoying but I also see dogwhistle terms thrown around too: ‘Spock’, ‘meltdown’, ‘lacking empathy’, etc.

28

Neel Krishnaswami 04.03.15 at 1:52 pm

@Bruce, Mainstreetmuse: I have a child on the spectrum, and my understanding is that the current best guess is that about half the reported increase is thought to be due to changes in reporting and diagnosis, and the other half is a genuine increase in the incidence of autism.

I mean a ‘person with a broken leg’ desribes someone who’s identity is seperate from, or prior to, the broken leg. That’s not the case with autism: it’s part of who we are. You wouldn’t say ‘a person with deafness’ or ‘a person with homosexuality’.

I dunno. Some parts of my son’s condition (like sensory hyper/hypo-sensitivities) seem more like biomedical conditions, since things like diet and nutrition have a giant effect on how severe they are. Other parts (like his tendency to anxiety/panic attacks) seem more like psychological disorders. Yet others (like the intensity of his interests) seem like part of who he is.

I mean, of course you’re right that these are artificial distinctions, since there’s no such thing as an essential self distinct from a person’s body and experiences. But as a parent, I have to help my son develop as a person, and making these distinctions helps me tailor my approach to his needs.

29

JanieM 04.03.15 at 5:41 pm

Concerning the topic of puzzle pieces –

I like the puzzle metaphor, and I think it’s too bad that it has (apparently) taken hold in a form that says some people have more pieces than others, and/or some people are more puzzling than others.

As for the latter point, I think everyone is puzzling. Just by virtue of being human, we’re complex, we’re messy, we’re often inscrutable even to ourselves.

As for the metaphor, and as a person with a complicated and conflicted relationship to gender, I have often tried to explain my life to myself using a model based on puzzle pieces. In my model there’s a huge universal bin of “pieces,” each of which is a possible human attribute or trait or quality, and we each get a full personal complement (by the numbers) when we come into the world. (Tall, short, good at math, unathletic, curly-haired, literal-minded, imaginative, whatever.)

Big complications arise because 1) some qualities, combinations of qualities, or arrangements of qualities are much more common than others, and 2) each culture and each era defines certain sets or arrangements of qualities as “normal” and others as “abnormal.”

I can echo the feeling SusanC attributes to people who are autistic: if you’re someone who actually has the condition, it’s not puzzling at all: its just how things are for you. In the way I think she means, I don’t – as a gay person and as someone who doesn’t fit the conventional gender expectations of my culture – find myself “puzzling” – I find myself perfectly natural, thank you very much. As SusanC says, it’s just the way things are for me.

But it has always been apparent that I can be puzzling to other people, and for that matter, the dominant culture’s simple-mindedness and dunderheadedness about gender is often puzzling to me. That wouldn’t even be all that upsetting if “puzzling” didn’t so easily get converted to “threatening” or “forbidden” or “abnormal” or any of those pejorative kinds of judgments. When that happens, even though the puzzlingness and puzzledness can be mutual, it’s the majority that tends to get its way, to the detriment of the rest of us.

30

Bruce Baugh 04.03.15 at 6:09 pm

Neel, thanks! Very happy to have more informed commentary.

31

Philip 04.03.15 at 8:20 pm

JanieM, thank you, the puzzle metaphor was helpful for me but I can see why it is not perfect and that was all I was trying to say. I am white, male, neurotypical, straight, and well educated and I am in my 30s single and have no career to speak of but I’m generally happy. People find that puzzling and strange but to me it’s more strange that more ‘normal’ people stay in situations that make them unhappy. To me the problem is that the simple mindedness of the dominant culture tries to place autistic people on the spectrum and ignores the complexity and messiness of individuals, but that’s a problem of the dominant culture that no metaphor can overcome.

32

Doctor Science 04.04.15 at 4:10 pm

Through a “More from The Independent” link, I learned about the autistic 10-y.o. who’s facing deportation from Australia because he may become a “burden to taxpayers” later in life.

What the actual fuck, Australia? A little googling shows that yes,this is now a thing. Is this happening in other countries?

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