Marti Leimbach
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The Man from Saigon
Daniel Isn't Talking
Dying Young
Sun Dial Street
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The Last Word
 

Okay, every author knows they will get good reviews and not so good reviews, even bad reviews. Ayelet Waldman, with whom I was fortunate to do an event at the Los Angeles Book Festival (along with Karen Fischer), reports that she just doesn’t read them. What is the point, she reasons, when she knows very well she will discard all the good and right and positive things said about her work, and focus entirely on the one awful comment made by a reviewer who otherwise loves the book? Her husband, Michael Chabon, has what I suppose is the opposite perspective. He actually publishes the bad clippings on his website. This impresses me. I am much more like Ayelet, wishing to remain removed from any truly negative comments and refusing, really, to engage with the whole reviewing process.

However….there are some comments in reviews that seem to require my response. Okay, I love it when they love the book – of course I do. But I don’t need to respond to those good remarks, only to enjoy them. But certain criticisms of Daniel Isn’t Talking do need a response from me. For example, when a reviewer (whether from Amazon or the British Medical Journal or a newspaper) state that their problem with the book is that they just don’t believe it is possible in this day and age for someone to be unable to get services for autistic children, as Melanie experiences when trying to get help for her son, Daniel. ABA is old hat, they reason, anyone can get it. All speech and language therapists work with non-verbal autistic children – didn’t I know that?

I know that today on one of the autism lists, a woman with a young autistic son is reporting that she is practically being threatened by a portage provider for pursuing ABA. I know that I STILL cannot get speech and language therapy for my son because they say that his language is too good now to require it. When he was non-verbal and I tried to get a placement for him in a speech and language unit, they told me he could not qualify for the placement because he was autistic – and autism was not a speech and language problem. I was told I needed a specialist who worked with autistic children, but no, they could not provide one. When I went privately to pay for it (at £80/hour) I was disappointed by the therapist’s work. She seemed to follow my son around somewhat uselessly and did not get a single sound out of him. When I tried to pursue another therapist it cost something like £300 for a morning and she could only come every few weeks. When I went back to the original speech and language unit after a year, when he was now talking, they had some new excuse. They saw him, but only to test him once a term at school. They never visited him at home. They never did actual speech therapy with him – just the tests to which they attributed a score. These days, now that he only has some pragmatics to sort out, they say he doesn’t need therapy, at least not by them. Now HOW can a child go from non-verbal to fully verbal and never once qualify for speech therapy? But that is what happened right here in Berkshire, England in 2006.

I gave up eventually and taught him language through a kind of ABA program….which brings me to ABA.

You can definitely can find ABA providers privately but not on the state’s ticket unless you live in certain areas (and in the UK you can almost never get it without going through a process that is something like court, called “tribunal”, which you will probably lose for reasons I can elaborate on later if anyone write to me and asks) . And even if you did get offered ABA – in America or in the UK -- it would probably not be as good as what you will see in my novel. That is because a lot of ABA providers just do “off the shelf” programs involving lots of discreet trials, little play, and all of it “at the table”. Now, if that is what works for your child, fabulous, but my child quickly discovered that “the table” was a great place to zone out of any human interaction and just manipulate objects and cards, giving correct answers almost as a means of pushing us away. We had to be a lot more inventive with him and everything we did was completely bespoke.

My experience with struggling to get services is not unique. I get letters everyday from people who have had the same trouble. Right now, I am reading a manuscript in which the author describes just how good the government has become at winning cases against parents of autistic children who want a better provision than they are receiving for their child. This is taking place in Montgomery County, which is understood at one of the better places to live if you want a quality education for your child.

So, when a reviewer behaves as though you could easily get help for a child like Daniel, all I want to say to them is, show me where. Show me where you will get 1:1 dynamic, play-based behaviour intervention by someone as talented as Andy? Show me where you will get someone who is inventive enough to figure out how to film playscripts or craft-making scripts, so that the child “gets” the idea of the play script well enough that he learns how to do it, and THEN (because the therapist doesn’t want the child to become rigidly fixed to the that particular sequence) he mixes the sequences up so that no one, single playscript is being adhered to, but instead drawn from in the same way that many “typical” children play? Show me, please. I’d love to see where this is happening. It isn’t happening. And that is because the therapist who was working with my real-life son and who did the playscript videos (one example of his inventiveness) made it. We just tried it out and discovered it worked one afternoon. That is because behaviour analysts, when they are good, are good at analyzing. He analyzed that Nicholas could learn from 2-dimensional media very easy, imitate exactly, and be motivated just because he saw it on television. So we put some skills on television.

(We ought to have done more with this, really. I think I’ll do a playscript of a child trying out a lot of different foods and being pleasantly surprised by how much he likes green vegetables….)

There is one other type of review I think is pretty wrong – and that sort recently appeared on Amazon.com. I like to read my amazon reviews because they come from regular folks, the very people who I hope will read my books, and because I cannot escape them anyway because I get emails from friends or relatives saying, “Did you see the good/bad/interesting/smart review on Amazon?” and then they conveniently paste it onto the email. Reading Amazon reviews is not nearly as frightening as reading your New York Times Review or Washington Post review, either, both of which I read after having a gin and tonic or some other suitable distracter, because if those go wrong you really do feel pretty grim.

However, the recent Amazon review I received from a mother whose son was not (yet) diagnosed, attacked everything about my book in a misguided manner and seemed to attack me, personally. This is because she doesn’t like ABA, among other things, and because I guess she thinks I abused my son into developing more typically. A friend of mine who also has an autistic son actually laughed when she read the review, but I didn’t laugh. I felt sorry for this mother; I felt bad for her. Because as much as I may or may not be criticised for trying so hard for Nicholas, for my entire family, I get to live with a child who is now fully verbal, who plays with his friends at school, who I admired today when he was sitting with his friends before a swimming lesson, explaining with great excitement how he had just gotten two, new pet gerbils. Tonight, his dad and he watched a game in the world cup, just like fathers and sons all over the world did. He and I read the last two chapters of Cressida Cowell’s excellent book, How To Train Your Viking, and he thought it was great that Hiccup and his dragon managed to win the fishing contest.

He is still autistic – don’t get me wrong – but with a flexibility of thought and a social connection to his peers and family that far surpasses anything imaginable for him when he was first diagnosed. While some people think it is either incredibly easy to get the services that helped him (WHERE do these people live that it is so easy?) and others think it is abusive to even educate him, which is what the rather eclectic type of ABA we used did for him, I get to know the truth – which is that he was exactly like Daniel in the book and that now he is a boy who is developing normally, or at least much more normally, and with a great deal of hope in his future. I think that, in terms of reviews, it is my son who has the last word.
 
Friday, June 09, 2006 | 23:20:31
Comment by Angel
 
Marti, I am glad you commented...it all needed to be said. I always find it interesting that those who are NOT living in the world of autism believe it is easy to find services. The cost alone puts extreme pressure on families, and marriages. What folks don't realize is that the service "may" be there, but insurance most of the time WILL NOT cover the cost. You are also correct about ABA and trying to find someone who is TRULY trained in ABA, not just someone who went to a seminar or workshop and now believe they have the knowledge. To say taht every speech therapist works with non-verbal autistic children is also not true. I always encourage people to do their homework before they publish what they believe as fact. Your words were needed. Parents around the world will read it and nod...those who are living it daily. There are many styles of therapy...ABA, VB, TEACHH, RDI, DIR...the list goes on....I always tell the parents we work with that our children are individuals, find what is best for your child and then let them sore! Thank you for all you do for Autism. As I read about your son and the incredible work God has done through you and his therapists working with him...sitting with his dad, talking with a friend...well, my eyes of tears of joy. The other day our son read his first word....and I rejoiced! My hat is off to you. You have integrity and intense boldness...NEVER LOSE THAT! Angel
 
Saturday, June 10, 2006 | 00:28:42
Comment by Marti
 
Thank you, Angel, and know that if your son can say ONE word he can eventually say MANY words, and i know that he is very young, yet, so you are really doing great. Some children I''ve known didn''t really say much at all until they were around seven, but their receptive language had been improved through a lot of intervention (of whatever type) . Recently, a therapist I know worked with a 9-year old who had been non-verbal up to that point. He is now using 3-4 word utterances, which I think is very impressive!
 
Saturday, June 10, 2006 | 17:11:39
Comment by Deborah M.
 
I would just like to write that I have had a terrible time getting help for my son who is 5 years old and diagnosed with an autistic spectrum disorder. I am amazed that people are saying that it is so easy to get services for children with autism. We are supposed to be getting a Statement of special needs, which requires that he go through all sorts of tests. I am stressed by the people who test him, their methods, and the secrecy surrounding the results and what they mean. We are not even sure what is out there for children like him, let alone where to find it.
 
Sunday, June 11, 2006 | 16:29:05
Comment by Simone
 
I agree. If it were so easy to get funding for a home programme and so easy to have the perfect ABA shadow at school funded by the Govt, well, who'd have grey hair and sleepless nights and nightmares about their child's future? Not us, because we'd be so happy that services and help were so easy to find and so cheap. Free even! I wish. My mother (in NZ) fortunately has read your book Marti, and someone said to her last week that when they lived in the UK (I live in London) it was so EASY to get 1:1 for their son and it was so EASY to help and it was ALL FREE. I said to my mother. WHERE? HOW? WHEN? My mum said the woman did not reply with any of these details, just the fact that I'd got it made by living in London and I should 'be sweet' with caring for my 3 year old ASD daughter. If only life were that simple!?? Thanks for the inspiration Marti and the recent book I couldn't put down. Keep up the great work!
 
Thursday, August 10, 2006 | 20:02:08
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