26 Sep 2008

A Friend Like Henry: My thoughts

It took me a long time to read this book by Nuala Gardner. It's short and simple, but it's the opposite of compelling.

I found the writing dull, flat and pedestrian and the only person whose characterisation felt real and alive, was Nuala herself. The book consists in the main, of an account of the autistic child's birth and childhood and closely follows my how-to-write-a-parental-autism-book template.

I had hoped to find some inspiration from this story, especially since we have recently had a canine addition to the family. There is surprisingly little about the dog Henry, named after a Thomas & Friends engine, a strategy I wholly approve of.

Yes, it's nice that Dale (the autistic boy) and the dog had a good human-animal relationship, but it wasn't anything all that astonishing. It just seemed to me that when the Gardners brought Henry into Dale's life, they happened upon something that interested and engaged him. They had the great idea of giving Henry a voice, as Dale was more inclined to heed them when they spoke through Henry. They used Henry as a teaching aid, maximising all those little teaching moments as they arose, and so helping Dale to develop and learn.

There were no miracles. It's likely that even without Henry, they could have found another way to reach out to Dale and find a way to engage him and support his education.

The story proceeds to describe all the struggles Nuala faced, first to understand just why her son was so different, and then to have her worries for him taken seriously. There's a lovely account of how her mother helped Dale learn to say his first word-tree-by patting a tree and labelling it with a single word. She then encouraged him to finish the sentence "it's a ..." giving him time and space to say the word, and he did. This is hailed as a miracle, which I suppose is fair enough when your child's first word comes at 26 months.

(Duncan's first word-train, emerged when he was nearly 3 years old. We played lots of ending the sentence games, a favourite was to sing the Winnie the Pooh song, letting him sing the very last word -bear, which he loved to do.)

I felt for Nuala when she described an incident at a playgroup when Dale didn't want to give up a plastic spoon when they were tidying up the toys, leading to a tantrum and condemnation from the other mums. I remember such things myself.

The moment a professional gave voice to the word "that petrified" her, autism, she says that "something inside me died," but her mum, an eminently sensible person from the sound of things, reminds her that "he's still our Dale, and we'll do whatever it takes to help him."

Unfortunately, Nuala struggles with this and describes how she cried and wished she "could find a way out of this hell...wishing I was dead. I loved Dale so much, but while I respected his disability, I hated his autism," a sentiment that makes no sense to me. Shockingly, to her, he laughed as she cried because, apparently, of his "lack of empathy and low comprehension of emotions."

Just as in part 8 of my template, Nuala explains how awful things were, "despite all our efforts to break into his world, autism was now engulfing him-and I was losing him to it."

I wonder, do parents of children with other disabilities ever speak about their children in that way?

For a book ostensibly starring Henry, we don't hear much of him until quarter of the way through the story and he's barely mentioned in the second half. As a pup, he approaches Dale, Dale strokes him and so the bond begins. Whereas Dale (like Duncan) learned lots via Thomas & Friends, Henry is a living companion, so there's lots of talk and play which both enjoy.

But bad things are a-stirring, and we enter the chapter corresponding to point 9 on my template. Dale kicks the dog one day, and everyone is shocked, and it's a turning point because Dale is desperately sorry for what he did, apologises to the dog and is devastated when his mum pretends that she's calling the breeder to return Henry. But most amazingly, the child who was said to lack empathy, tells his dog that he loves him, and, stop the press, tells his parents he loves them too. Wow, they can do that?

(Just so people know, Duncan's been telling us that he loves us for years, without any of these miraculous interventions.)

Time passes and things happen and we're told about almost all of them in this book. There's a huge cast of characters and schools mentioned and I was losing track of who was who before long. There's a lot less about Henry than I expected, and more about their struggles to have a second child and various family traumas. Much emphasis is given to their efforts to have Dale attend mainstream school as he was "regressing, in that he was picking up autistic mannerisms and copying inappropriate behaviour from the other children" who were also autistic. We couldn't have those awful children contaminate him now, could we.

The Gardners were not fully immune to the autism-biomed quack theories and Nuala tells of a conference with the Grandaddy of autism-vaccine nonsense himself, Andrew Wakefield. She knows that his notion of a link between MMR and autism is bunk as Dale was clearly affected from birth but she believes in his invented disease of autistic-colitis. Later, she spoke with the star attraction who recommended that they get Dale checked out, which led to an appointment at a private hospital for some unnamed medications which soon resolved his unmentioned problems.

Moreover, by now Nuala has a second child, who is not exposed to the MMR, as they "took the informed decision to give her single vaccines at six-month intervals (my emphasis)."

The Gardeners did their best to help Dale learn and progress academically and socially, enrolling him in drama classes and extra maths lessons. Dale was eventually able to attend mainstream secondary school, where he "passed" (my word) as non-autistic. He didn't even know he was autistic until he was around 12, when he is said to have asked his mum why he was struggling so much with his school work, "Why did I get born with problems? Do these problems have a name?" They had hidden the truth about his neurological condition from him for so long, it was a terrible shock to him when he was finally told the truth.

It can't have helped that his mum was even then depicting autism as some sort of troublesome add-on. She told him "if you didn't have such a strong desire to be like everyone else, you'd never be where you are now."
Way to go at bolstering his self esteem there. Let the boy know that the aim is to pass, to hide the autism.

Dale was concerned that his sister "had it" and Nuala assured him she was "all right and doing well." But no, it turned out that her "worse nightmare unfolded as I watched Amy [Dale's sister] slowly slipping away from me."

What is it with these changeling metaphors and autism-parent authors?

But never fear, for Henry is brought back into the story at last to save Amy as well as Dale, and when he's old and ill, Nuala's thoughts were, "How do you let go and say good-bye to someone who has helped give you back your children?"

It's clear that Henry was a wonderful pet, gentle, loyal and well trained, but it's an exaggeration to say that he gave her back her children, who after all, hadn't gone anywhere, but just had some growing up to do.

12 comments:

therextras said...

Thanks, Sharon. You do a saint's work - reviewing the book, not parenting your lovely children.

I'm working to pin-down and show some sense to treating children for 'sensory integration disorders' (among many on the spectrum lurk) with special attention to brushing. Several posts on that, with a new one today.

Oh! Your comment on the formula post just came to my inbox! Sorry, I don't do chat rooms. LOL Barbara

Sharon said...

Oh I'll have a read, when I've finished polishing the halo.
(It's not often I'm called a saint, so I'll relish it thanks!)

Anonymous said...

This attitude irks me terribly, too. I'm glad that you are reading such things so that I don't have to.

It's odd how people perpetually fail to understand that atypical development is still development: one simply has none of the markers and road signs in order that "normal" parents can rely on. One has to much more carefully pay attention to one's children and constantly be open to doing what they need when they need it. It's much more active parenting than, apparently, some had in mind.

"Wakefield resurgent" scares the snot out of me.

Sharon said...

Hi Anon. You have phrased it perfectly in your comment above. Thanks for that.

Chaoticidealism said...

Hmmm... Sounds like I'd owe the library another $27 for this one.

Thanks for reviewing. Will avoid.

Club 166 said...

Saint Sharon.

Doing the hard work, so we don't have to...

Thanks for slogging thru the entire book. It seems strange that there is an entire subculture that would actually go out and buy something like this and enjoy it and think it a good read!

Joe

Sharon said...

Chaoticidealism and Joe, glad to be of service.

I had a look at some of the other reviews of this book online and seem to be in a minority of one! The rest of them are just lapping it up!

Ph.D. Ioana Codoban said...

Hi Sharon,
I arrived on your blog by accident and read your opinion on the title book.
As I received the book as a present and read it this summer, I must say that you are a bit harsh with it. Although, considering the title, I was expecting more details about the relationship between boy and dog, I found the story easy to follow and interesting from several points of view. One of the most important ones is that it educates parents (and not only) about autism. Many of the parents I know consider or considered at a certain point in time that their children have some kind of problem, often they talk about autism. Having a Bachelor in Psychology, my natural tendency is to correct them and try to show them how this ideas impact on their children, not always with success so I hope that many parents will read the book in order to better understand the condition, its impact and also what it means to label your child that way.
A second point would be that many parents with autistic (and not only) children tend to give up the fight against the condition. The book can be inspirational also in this sense as it shows that breakthroughs can be achieved and that even autistics can find equilibrium and happiness.
There are also several other arguments that I would mention as interesting when indicating this book to friends, but from my point of view just the ones mention above are already making it worth reading. In comparison, why don't you read The Fifth Child by Nobel Prize-winner Doris Lessing, which I consider much less educative, even if better in style. Would be curious what you make of it.
Thanks for sharing your thoughts and Happy New Year!

Ioana

Sharon said...

@Ph.D Ioana Codoban, thanks for your comment.

The story is easy to follow and I too felt the title was misleading. There is less about the boy's relationship with the dog than I expected. I don't think my assessment was harsh. I've given reasons for any criticisms.

There are many better places for people to find out about autism than a hyped up parent book in which perfectly ordinary autistic children's lives are made out to be ever so dramatic.

I don't understand your meaning here, "I hope that many parents will read the book in order to better understand the condition, its impact and also what it means to label your child that way."
I see no harm in the label autism when it's what describes an individual's way of perceiving the world.

Neither do I think it's important to, as you put it, "fight against the condition."
I choose to work with my son's autistic tendancies and use his skills and preferences to his advantage.

"The book can be inspirational also in this sense as it shows that breakthroughs can be achieved and that even autistics can find equilibrium and happiness."

As a psychology graduate, is it really surprising that even autistics can be happy? You would learn lots by reading some of the excellent writing by adult autistic people. There's a selection on my sidebar. The parents whom you think would be inspired by this generic account of a "woman overcoming adversity" would learn much more from their accounts too.

Ph.D. Ioana Codoban said...

Sharron, thank you for your feedback.
I will try to explain some of my statements in order to clarify what I was meaning.

In my opinion, it is good to have a critical approach to things, so I am not against your presentation of the book, but just felt the need to express also my opinion.
I agree also that there are better places to find information, but I can assure you that many parents run away from the "right sources", probably because of certain intricate coping mechanisms. Not all parents do that, but many, especially the ones that like to label their offspring with fancy psychological names. This is what I think that is a bad approach to child education, and it is in this case that I see the works of the book, as I know many parents that tend to over label their children. Could it be a trend? Maybe...
I repeat because I am not sure I get the message right: the book can be useful to explain what autism is in an easy-to-read (and assimilate hopefully) format (also because it is a story-telling type and not a scientific/medical approach) and convince over-labelling parents that it is wrong to believe your child has autism if she/he has good mathematical abilities (I know a family that sustains that their son has autism because he has good grades in math!!! maybe the metaphorical education through real-case stories can serve for them).
I agree with you that labelling autism (when it really is autism) is not wrong, sincerely I believe it is a good thing as it can help afterwards in various ways.
Also, I would like to correct my expression of fighting against autism, you are right the best way of expressing it is work with. What I wanted to underline is that some parents, after having "obtained the labelling", tend to give up any measure to "work with" as you say, and just say: she/he has X. Again, I can make some examples here (not directly with autism but other conditions) of parents that gave up improving their son's memory because he was "classified" of low IQ. I hope I am getting the message right because I realise that expressions are quite different also because of different language background. In this context I think the book can help parents overcome this "passive-acceptance" attitude, and not in the sense that autism does not mean the person is happy. My sentence was wrong here, sorry.
I am sure that your links are helpful, nevertheless I also believe that books (sometimes labelled "popular") have their role in this and Nuala Gardner's book is a good example, in my opinion.
By the way, Happy New Year to you and your family!
Hope this time I got my message the right way :)

Sharon said...

Thanks for getting back to me to explain further. As most of the reviews I read of this book were positive, I'm not surprised that you like it and think it's more useful than I do. I am a bit jaded by the publishing phenomenon of parents overcoming autism. I wrote about that here. There are some good books by parents too. Two of the parents writing on the Autism Hub blogs have had books published.

I don't know any parents who over label their children myself. No doubt it happens, but in the UK and Ireland at least, it takes time and effort to have your child seen by the professionals and receive a diagnosis. Perhaps some parents adopt labels without diagnosis, but then again, all parents do stupid things and make mistakes sometimes. I don't see how this book would dissuade them.

Thanks you clarifying that you do mean to work with the child. Yes, it's important that parents do not give up trying to educate their child just because s/he is disabled. The book did show have good examples of the mum working with her son's preferences. I think like all these books, there's some good in it, and the reader can take from it what helps them and leave the rest.

Happy new year to you too!

Ph.D. Ioana Codoban said...

Thanks again for the interaction and feedback!
I have just read your post on the publishing phenomenon :) and I have a better understanding of your opinion and I must agree :)
The over-labeling approach could be a cultural thing, personally I have never understood why a parent would do this but I can see how they get attention with the "extraordinary" label they invent (often without diagnosis, but hey, specialists often are wrong and parents are always right!). I consider it unfair to their own children and to children that have a disability and need a proper diagnosis and commitment.
I see what you mean with not dissuading them in this behavior as it is actually motivated by a different mechanism. Nevertheless, if they read the book or other books about autism you indicate, I truly hope they let it be, so that it "exits the trend".
Thanks again!