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Early Intervention and Autism: Real-Life Questions, Real-Life Answers Paperback – January 1, 2008
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“If you have a child with autism, Early Intervention & Autism: Real-life Questions, Real-life Answers will become an essential addition to your library, the book that sits at your bedside table, the one you open again and again when questions loom large. It explains early intervention, but it offers so much more…. Early Intervention & Autism gives parents the hands-on tools and strategies to start working effectively with a child, even before EI services kick in. Autism is a continuum; each child with ASD is unique. As Dr. Jim makes clear, there is no one-size-fits-all intervention. His focus is always on the child, treating the child, not the symptoms.”
Dr. Temple Grandin
About the Author
Dr. James Ball, a Board Certified Behavior Analyst, has been in the autism field for over twenty years providing educational, residential, and employment services to children and adults affected by autism. He is currently the Clinical Director of Caring Technologies, a web-based company that explores the way technology can enhance the lives of individuals on the autism spectrum. Also, he provides private consultation to organizations, schools, and families regarding staff training, parent training, and home/classroom support services.
Dr. Ball is the Director of Clinical Services for New York Families of Autistic Children, a private not-for-profit organization providing support and training for children and families in New York City. He is also a member of the New Jersey Center for Outreach and Services for the Autism Community (COSAC) Board of Trustees, and a member of the COSAC Professional Advisory Board. A past member of the Autism Society of America Board of Directors, he is currently co-chairperson of the ASA Panel of Professional Advisors and sits on the advisory board for the Autism Asperger's Digest magazine. Dr. Ball has lectured nationally and internationally on various topics related to autism, such as inclusion services, functional behavior assessment, social skills training, behavior management, direct instruction, sensory issues, and accountability.
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The first thing I would very respectfully mention to Dr. Jim, or any professional, family member, friend, or loved one of a parent of an ASD child: Instead of saying “I know how you're feeling,” I would recommend saying “That sounds like it would be hard” or “I understand from things other people have told me that can be very difficult” or “I've never walked in your shoes, but from what I've been through with my own child I can see that would be tough.” Because really, you don't know how anybody else is feeling, even if what they're going through looks pretty similar. And when somebody has been through a whole lot of heartache, that one statement can emotionally make them turn away from you and perhaps not listen to the other, more valuable portions of your message. For me, I was so upset I wanted to exit the book right then and there. Because, with all due respect, you don't know what I'm even going through much less what I'm feeling, or what going through all of this has done to me. And it has definitely done some things.
This book, by and large, is written almost like a play, where you get to be a fly on the wall as Dr. Jim councils a couple of parents whose child has just been diagnosed with ASD. In this pretend exchange, the automatic assumption is that the parents are devastated by the diagnosis and need help accepting or coping. If you have no problem accepting the diagnosis, this section may be hard for you to stick through. There are pieces of information that are worth sticking through these sections for further in. For me, I fall into that category because I never had a problem with the ASD diagnosis and I didn't find that section useful. The diagnosis that left my wracked with sobs and a shattered heart was the Sotos diagnosis that came in 2016, because I had looked at the list of co-morbidities when the first round of genetic testing revealed the possibility of my son having this condition also. And it's not the kind of list any parent says “sign my kid up for that!”
So that brings me to my next point. All of the case studies given in this book showcased remarkable improvements from the early intervention programs. So, it is important to understand the studies done by Lovaas using his approach to ABA, which are frequently cited in advocating for this approach, only 50% reached what they considered “recovery” level. And some children showed no improvements at all. And, as Dr. Jim mentioned, there are not studies of sufficient sample size or quality on many of the other methods described and used. My concern is, that by presenting an overly “rosy” view of the outcomes, it is going to leave parents of lower functioning children feeling even more isolated and abandoned then they already are. As a consumer, and as a mother of a lower functioning child who progresses at a rate much slower then the one intimated in this book, I would be so grateful if authors of these books would spend a little extra time addressing more in depth the things parents in these circumstances need to know. And for some parents, if their child isn't capable of progressing at the rate of a higher functioning child with ASD, and they don't realize that could be the case, I am concerned they may choose to give up when they don't see that kind of forward momentum.
I do appreciate that as the mother of a child who engages in self harming behavior, that he does at least briefly mention a couple of strategies for dealing with this and one resource you can turn to. I would also recommend some reading that can be found on the Autism Speaks website, “Challenging Behavior Tool Kit,” and also “Targeting the Big Three” by Helen Yoo.
For me, I have a son that used to violently throw everything off of any surface top he could reach. Took over a year of work to extinguish. A child who painted in his poop once we got him over the goopy texture tactile defensiveness. A child who would dump out every toy tote he had the moment he entered in the room. Took two years of work to extinguish. A child who still dumps out every article of clothing from his dresser, and we're still working on that. Who goes through periods of removing all of his balls from his ball pit. Took months to extinguish that the first time, it's recently emerged again within the last week. A child who struggles through periods of self harming.
And when it comes to fear of public places...In the beginning, it was vomiting. Once he got the core strength and gross motor abilities to fight going in, fight he did. Once we got him over the sensory reactions, what it looked like was we walked into a place and we walked out. I had to carry him in with him kicking and crying, because he wasn't going in on his own no matter what he was offered. Once he got used to that and could accept we'd leave right away, we had him walking in holding our hands. After that, it went up to standing in for two seconds. We've been working on this whole process for years. Right now, today we just finally mastered 38 seconds. I could go on, but these are the types of behaviors and situations that management strategies of aren't as commonly talked about in depth in the books I've read on the market, and as a parent of a child going through this, I want the market to reflect my needs and the needs of parents like me. Because his flapping is the least of my concerns, and when we were writing his ABA goals, the Behavioral specialist involved said, “Yep, I can agree with that.” I can't picture a day in the next 2-3 years where it even comes up as a priority for our team given the nature of the other challenges we are dealing with, to be perfectly honest.
I also have to mention, for other parents, this book gives the impression that early intervention programs are going to make all of the methods he mentions available to them once their child is diagnosed. They will not. I live in a rather large metropolitan area, and even if a child has a diagnosis of ASD in the state I live in, they will not receive any of the behavioral therapies unless they meet diagnostic criteria for long term disability, and ASD alone won't qualify you for that. There must also be sufficient impairment in some of the developmental milestones. And even then, ABA is the only one covered. So for higher functioning kiddos in our state, unless their private insurance covers these therapies, which many do not, they will have to foot the bill themselves, and it's something people need to be prepared for, because these therapies are expensive as heck.
Next up, I also feel like the book presents on overly sanguine view of how things are going to go with the typical public school system. In my experience, the argument about the reduced cost of care once the child is an adult has no sway over administrators when it comes to increasing their spending now. Because they're not dealing with the individual at that point...not their dime then so to speak. They care about their budgets now, and if you have a child like mine, who is more of a danger to himself then to others, you could be in for a serious fight if you want to keep your child in the public schools and get them the supports they need. Despite the fact that they were breaking the law, in the public school my son was in, they were routinely stringing desks and bookshelves across the doors to keep him in. They would move them at pick up times. Around the time I pulled him, I had returned two different kiddos to the classroom over the course of a week that they hadn't noticed had made it out because the class size had gotten larger, and then I received his most recent IEP update. His improvements were much better from his hab programs, so I made the decision to pull him and focus on one on one therapy. I could have put the fear of the almighty law into them, but having been a manager in other settings and seen how that can go down, it doesn't usually end in people singing “Kumbaya”. And I had definitely advocated for him to have his own aid, and presented him with reports from his other therapists, and a letter from his geneticist. That changed nothing. My life already has enough challenges, for me, the acrimony and the expense of lawyering up may have got me what I wanted, but I would have been devastated if they took any of that out on my son, who is non-verbal, and couldn't tell me. So, we're choosing different options for him because that fight wasn't worth it to me at that time. Other people may want to lawyer up, and unless their kiddo is harming other children, they may need to if they're not in a school specifically for ASD kiddos.
Overall, I think there are a lot of great teaching strategies mentioned in this book that are very useful overall to know, and I do think it's definitely a worthwhile read for those. My husband thinks I should enumerate, but this review is already really long, and he gives an overview of a whole lot of strategies for teaching communication, skills, fading behaviors...I think those sections have a lot of value to offer. But I would caution parents to be aware of the things I have mentioned, especially if they have a child who is considered lower functioning. And to know that the time frames can vary a whole lot for kiddos on the spectrum, so don't ever give up.
This will be our second school year working with Dr. Jim. I have absolutely no hesitation in recommending this book. Having observed him with our children and staff, consulted with him and laughed with him; I find that his great insight, experience, kindness and respect for these children and their caregivers is a priceless resource. This author truly knows whereof he speaks.