With the Light: Raising an Autistic Child, vol. 1...

[fajrdrako]

One of my random interests is autism, and I've read numerous books on the subject, most of them written by parents detailing their experiences in trying to raise an autistic child. This book is about exactly that, but it's different for two reasons. One, it's Japanese; most of the books I've read have been about English or American children. Two, it's a manga.

The story reads like autobiography, but it's a fictional account (based on reality) of a young woman, Sachiko Azuma, with a new baby, a boy named Hikaru. Her husband is mildly workaholic and can't help her much: he's concerned only because the baby cries all night, every night, and keeps him awake. Sachiko is distressed because her baby hates to be held or touched, won't look at her, and seems to never be happy - prone to tantrums that go on for hours, and frequent anxiety attacks. Neighbours gossip that Sachiko is abusing the baby. Sachiko's mother-in-law thinks she's lazy and careless. Sachiko is increasingly depressed, isolated, and exhausted.

But things get better when the baby is diagnosed as autistic; after a period of difficulty, learning, and denial, Hikaru's father Masoto changes his priorities. Family and neighbours struggle to understand how and why the child is so very different, while Sachiko and Masoto try, with unending trial and error, to discover Hikaru's needs and help him meet them.

So the point of the manga is educational: what autism is like and how to deal with it. But the strength of the story isn't in the plot, but the evocation of feelings. The scene that got to me was when, after several years of Sachiko despairing that Hikaru would ever call her "Mommy" or touch her in affection, Hikaru sees her crying and picks some flowers to put at her feet to comfort her.

The story is divided according to Hikaru's age and situation. First, babyhood and preschool. Then they find a good day care centre, where Hikaru is happy; after many difficulties, a decent school for him to attend. There are high points of action when Hikaru slips away and gets lost, or when he climbs onto to a roof with a friend and it takes the fire department to get the children down.

Towards the end of the book, Hikaru's father works for a company that uses technology to help people: designing, for instance, a timer that isn't on a dial, so Hikaru can see, with a series of lit dots, how much time has passed for a certain task, and how much time he has left - making a huge different in Hikaru's ability to cope. Because he can't remember words, they take photos of things he needs to know, and put them on tags on a string around his neck, and they can use them to show him who and what they are talking about. It is clear that by the age of five or so, Hikaru can read much better than he can talk or understand speech.

One point that comes across is that Hikaru needs a whole community to function: enlightened social services, realtives, neighbours, family. And still it's a struggle for the Azuma family to find what they need - a school that will take him, teachers who will consider what he needs. Since they do find these things, and Hikaru is seen as thriving and even happy by the end of volume 1, I couldn't help wondering if there wasn't something a little over-optimistic about the tone. It could all have been so much worse, and in many cases, must be. For instance, the other kids like Hikaru, and are nice to him: no bullying or ostracizing him. This is possibly due to the diligence of the teachers, and it would be nice to think it is a typical case - but is it?

One of the most interesting psychological angles was Sachiko's feelings about other mothers of young children around her. As her child became so obviously different, she felt oversensitive to their reactions, angry with their comments and lack of understanding, hurt by their judgements. Then eventually she realized that the problem is not primarily in their, but in her: she was jealous of them. Once she realized that, their sympathy or hostility was easy to handle.

Towards the end of the book, Sachiko has another baby, Kanon. Hikaru and Kanon fight, since the baby has no consideration of Hikaru's situation or needs, and he has no ability to tolerate a crying baby. But they come to a sort of state of truce, and one of the last images of the book is an endearing scene of Hikaru sleeping with one arm draped protectively over his sleeping sister.

Comments

[countrycousin.livejournal.com]

Interesting. Thank you. Maybe not overoptimistic - I believe many individuals make more rapid progress once they and their care-givers discover how and why to communicate - it is getting to that point that can be difficult. Also, there are meds that help.

Have you seen the movie David and Lisa?

[fajrdrako.livejournal.com]

No, I don't think I have seen David and Lisa. Does it have an autistic character? Off the top of my head, the only autistic characters I can think of in movies are Dustin Hoffman in Rain Man and Sigourney Weaver in Snow Cake, though I might be forgetting something.

[countrycousin.livejournal.com]

I don't think I know enough to tell. Both are institutionalized for mental problems that are not autism, but might be related. David is very functional, but compulsive and does not like to be touched. Lisa is marginally functional, fragile, and communicates most effectively in rhyme. The movie deals with how they come to deal with each other and the outside.

[fajrdrako.livejournal.com]

That sounds good. I must try to see it.

I was reading today about an Israeli general whose son is autistic and retarded. Since most of the autistic people I've read about have been highly intelligent, and would need to be so to cope, this is difficult for me to imagine.

[countrycousin.livejournal.com]

I consider myself (self-diagnosis) to have mild Asperger's. I am a classic techie nerd, and I suspect that many others in that category are also somewhere out on that spectrum.

When I was in HS, I did very well on the IQ tests of the day.

But in thinking back on it, I don't know how to separate my intelligence, whatever that means, from the fact that my condition, which was the source of some grief in grade school, enabled me to do some tasks exceptionally well, and those tasks were important for the IQ tests that I took (as well as HS classwork). That also enabled me to get a good job and retire early - I have no regrets - but in the course of my career I came to realize that while I was very good at some things, there were other important talents that I lacked or was mediocre in. I don't consider those with autism to be necessarily highly intelligent - I consider many of us to somehow have some of our processing power focussed in some way so that we are very good at some tasks - but poor or miserable at others. Hence, e.g., the "idiot savant".

I think there are qualities that contribute to intelligence. But in order to determine those qualities, one has to be able to communicate. Difficulties in communication seem to be at the core of many non-Aspergetic autism cases, and the first step in making progress seems to be making some contact with the person that motivates the person to try to communicate and shows the person how this might be done.

All that blather was simply to express the thought that the general's son might not be as retarded as thought. But certainly there are retarded people - people who can communicate, but remember with difficulty, can't manage complex tasks, can't reason well. But with an autistic person who doesn't connect well with the world, how does one tell? It might be that the son can do some things very well, but they haven't been found yet. But you read the work - that might all have been considered.

[fajrdrako.livejournal.com]

I consider myself (self-diagnosis) to have mild Asperger's. I am a classic techie nerd, and I suspect that many others in that category are also somewhere out on that spectrum.

I know a number of people I have considered as such. In a few cases, I know they had brain damage at one time or another, often due to an accident or illness. I therefore assume similar symptoms can occur due to physical injury, though I've never read anything that says so.

I don't know how to separate my intelligence, whatever that means, from the fact that my condition, which was the source of some grief in grade school, enabled me to do some tasks exceptionally well, and those tasks were important for the IQ tests that I took

I had the test-taking skill too. And a skill for 'faking it' on essays and assignments. This was very handy in school; not so much in real life.

I sometimes think I have the opposite syndrome - though if it has a name, I don't know what that name is. Too much connection with people. Too much of an ability to know what they're thinking, feel what they're feeling.

with an autistic person who doesn't connect well with the world, how does one tell?

It must be very difficult. And I've heard of autism cases where they thought - before they got the right diagnosis - that the person was retarded. Then learned he wasn't, when they found the right tests or the right questions to ask, or the right medium to ask them in.

[countrycousin.livejournal.com]

I sometimes think I have the opposite syndrome - though if it has a name, I don't know what that name is. Too much connection with people. Too much of an ability to know what they're thinking, feel what they're feeling.

heh.

Well, if there are people whose technical abilities are enhanced at the expense of their interpersonal perceptions, perhaps it is reasonable to expect that there are people whose interpersonal perceptions are enhanced, perhaps at the expense of other talents.

Although there are people who seem to be just plain gifted - can do well at whatever they choose to do.

But there seem to be some of us aimed in a particular direction, by what, I don't know, but if it goes too far, perhaps results in autism.

[fajrdrako.livejournal.com]

it is reasonable to expect that there are people whose interpersonal perceptions are enhanced, perhaps at the expense of other talents.

I certainly have negative technical abilities! I'm intelligent enough to learn if I must, but I have no affinity for technological skills, or sciences, or mathematics, and they were always a struggle in school.

there are people who seem to be just plain gifted - can do well at whatever they choose to do.

True. And: I wish!

[kk1raven.livejournal.com]

I get the impression that it has been common for autistic people to get labelled as being retarded. A couple I used to be friends with have a son with Aspergers and ADHD. The local school district tried to insist that he was retarded for quite a while, until they paid for expensive testing to prove otherwise. Even then the school district didn't really want to cooperate on educating him.

[fajrdrako.livejournal.com]

It's horrible when schools are uncooperative or uninformed. It sounds like the dark ages - and there's no excuse for a school to be so clueless.

[xinef.livejournal.com]

Have you read Elizabeth Moon's "The Speed of Dark" (http://www.amazon.com/dp/0345481399)?

I found it to be fascinating reading and an interesting glimpse into the mind of an autistic man.

[fajrdrako.livejournal.com]

I haven't read it yet, though it's sitting on my bookshelf - at the top of my 'to be read as soon as possible' pile. Maybe I will start it now.

[wijsgeer.livejournal.com]

not a book but an invention. Some time ago a Dutch industrial designer made cubes that said words. I forgot the details and I cannot find a source for it (will look for it tomorrow if you are interested). It was some kind of device that autistic children could hold against objects in their house (I assume fitted out objects) and it would say the name of the object. This was apperently more succesfull than the oarents saying it over and over again.
Oh I can second the recommendation of the speed of dark, terrific book. An other bookrecommendation is "born on a blue day" (http://www.powells.com/cgi-bin/biblio?inkey=92-9781416548195-0) it is autobiographical, by someone who has an amazing insight in his own position and who reflects on how his mind differs. Smart and couragous.

[fajrdrako.livejournal.com]

It was some kind of device that autistic children could hold against objects in their house (I assume fitted out objects) and it would say the name of the object. This was apperently more succesfull than the parents saying it over and over again.

That makes sense, since one thing austistics have trouble with is loking at, or focussing on, other people. But with a device like this they wouldn't have to, and the presence of the person wouldn't be a distraction to learning the word.

Thanks for the recommendaiton of Born on a Blue Day, I'll look for it. Good title.

[nina-ds.livejournal.com]

What a fascinating idea. Just from the cover, the style seems almost Beardsleyesque. It doesn't look like "regular" manga to me, which is often very hard-edged.

[fajrdrako.livejournal.com]

I think there's actually a lot of variation in manga styles. I'm no very good at recognizing manga artists yet. Clamp, Ryoiki Iegami, Yasuko Aoike - I think maybe they are the only ones I can name! A few favourites.

[dargie.livejournal.com]

The music of Hikari Oe (http://www.amazon.com/Music-Hikari-Oe-Vol-1/dp/B0000034XQ/ref=sr_1_2?ie=UTF8&s=music&qid=1196266959&sr=1-2)

[dargie.livejournal.com]

Sorry, that was a bit terse. Sounds to me as if that book is based on the life of Hikari Oe, son of Nobel Prize-winning author Kenzaburo Oe who has also written a book about his son. (http://www.amazon.com/Healing-Family-Kenzaburo-Oe/dp/4770027338/ref=pd_sim_m_title_3)

[fajrdrako.livejournal.com]

How very interesting! I want to read that - thanks for pointing it out.

I just checked the public library, and they have a copy. I've ordered it, happily.

[walkingowl.livejournal.com]

I know you don't agree with me when I do this, but -- Hikaru's father also shows signs of being on the autistic spectrum.

I saw this book the other day. I'm pleased that you approve of it. I was not sure if it might not just be another "aww, pity them" sort of thing; clearly, it is not.

I would point out that I feel that Hikaru's mother's overreactions to others' reactions to her and her son is not (as you say she herself concludes) only jealousy. I think she's genuinely aware of genuine emotions on their part, being directed to her and her son whenever they are in public. It's kind of a natural neurotypical thing, in my experience.

Hm?

I still have not watched the rest of Snow Cake; waiting for the stress level to lessen, here.

[fajrdrako.livejournal.com]

Hikaru's father also shows signs of being on the autistic spectrum.

You've said before at various times that you think certain autistic people have an autistic parent. Do you think it's a matter of direct genetic inheritance?

I was not sure if it might not just be another "aww, pity them" sort of thing; clearly, it is not.

There's an aspect of that, particularly when the mother is going through hard times. And the story repeats itself a lot - sometimes, I would guess, because it was originally published in serial form and so had to bring new readers up to speed, and sometimes to reinforce the message.

As for the mother's jealousy: the point was that she felt better when she realized that she was jealous. She'd been unaware of how jealous she was. But obviously she loved Hikaru very much and that helped her also realize that she was happy with the circumstances had, once she knew what the situation was.

The only part I thought you'd really disapprove of, is that they refer to autism as a disease. I wondered if that was a translation anomaly, or (more likely) a faithful translation of the original.

I really enjoyed this manga.

[walkingowl.livejournal.com]

The only part I thought you'd really disapprove of, is that they refer to autism as a disease. I wondered if that was a translation anomaly, or (more likely) a faithful translation of the original.

Bingo. It made me flinch when I read the word....

I think it's probably considered that in Japan -- knowing that the Japanese have a strongly stratified culture and strongly prefer "perfect" people. Damn, that sounds snarky; sorry.


Do you think it's a matter of direct genetic inheritance?

I don't yet know enough to be able to say. However, it is either that or an aspect of the environment created for the new child, and I'd be one to shy away from the nurture-is-all thing -- I think we have inborn traits that are strongly enough in place to still be there no matter what kind of environment we get placed into. To a degree. It's certainly not all or nothing; surely, it's a combination.

As for Hikaru's mother finding relief when she identified herself as being jealous: if that is what gave her peace, then good for her. I am saying that I'd call it another combination, and not an all-or-nothing. That is where I would say she fell into a linear thinking sort of mentality; again, however, if that gave her peace, then that is not for anyone else to question. And I do mean that. If putting that label on her emotional situation comforted her, then that is what worked for her, that is what she found to be her truth, and I am no one to try to argue her out of it.

[fajrdrako.livejournal.com]

Bingo. It made me flinch when I read the word....

I flinched on your behalf.

I'd say the jealousy thing was part of Sachiko's truth, not the whole truth, but the real point is that it was self-knowledge and acceptance that helped her to get over her depression and anger, not anything specifically related to Hikaru's progress or how she was treated. And that's an important psychological point for anyone, in any circumstances.

Interesting, the worst and most frustrating part of Sachiko's experience was her treatment (and Hikaru's treatment) by the bureaucracy and the medical profession, especially in hospitals.

[walkingowl.livejournal.com]

Self-knowledge is the most valuable part of anyone's journey through life. If this was part of Sachiko's truth, and she came to consider it to be a larger part of that truth, then for her that was what it was. I have my own issues about that complex of behaviours and reactions (is it a typo when I don't intend to spell the word like a Canadian, and do anyway? hm!).

I flinch, also, for Sachiko regarding the bureaucracy and the medical monolith. That can break a person's spirit in so many ways.

I think I need to pick up this book. Thank you.

[fajrdrako.livejournal.com]

If you do, I hope you enjoy it.

Canadian spelling isn't a typo, it's just a psychic spelling connection.

Yes about doctors and bureaucracy. And that seems to be true in every country.

[omnivorously.livejournal.com]

If you're interested in that kind of thing, checked out the comm asperger, good conversation there. And I'm sure there's comms for ppl with autism or whatnot, too.

[fajrdrako.livejournal.com]

Good idea. I can do a search.