Thursday, November 18, 2010
1001 Tips For The Parents Of Autistic Girls
I have been asked to give a book review as a part of the 1001 tips for the parents of autistic boys and girls blog tour. I chose to review "1001 Tips For The Parents of Autistic Girls" by Tony Lyons. The reason being that my youngest Zoe, had only been formally diagnosed a few months ago. Before that, most of my knowledge about autism came from my experience with boys. Zoe's diagnosis did not come as a surprise-we had suspected as much for a little over a year. Once we had had her screened, we knew it was just a matter of time. It was the time BEFORE her screening that surprised me. We knew she had some "issues"..but hey, in our family, who doesn't? We just hadn't put the pieces together as she had presented so much differently than her brothers. I felt a little foolish for not having seen the warning signs. There isn't a whole lot of research done on girls with autism, so I was happy to see a book written especially for them.
In the introduction. Lyons expresses that there isn't much out there information wise for girls on the spectrum. He also states that this book is a compilation of information from many different sources. That some of the "tips" may appear to contradict themselves. That knowing your child is key in deciding which tips might work for you. He also recommends that you discuss ANY and ALL treatment with your child's physician. I think all of this is important to know BEFORE you dive into the book. Otherwise, you will wind up confused.
Some sections of the book are geared to older girls and circumstances that we are not yet dealing with. So I chose to focus on the areas that concern us now. Mainly diagnosis, education, and diet.
I found "Diagnosis and Evaluation" (chapters 3 and 4) to be quite informative. Just speaking from my own experience-autism in girls can present very differently than it does in boys. Early intervention and parent persistence is stressed in this section. For diagnosis, there are great tips on what to to if you think there is a problem, where to go, questions to ask, and symptoms you should look for. I did not agree with everything. For instance
"PDD-NOS Does not meet sufficient criteria for diagnosis of autism or aspergers. Frequently children are initially diagnosed with PDD-NOS and then move to autism"
Two of my children have a diagnosis of PDD-NOS, it is accepted by the state and school district as being part of the autism spectrum. They receive services because of this. There has never been any indication that their diagnosis would change.We were told that with early intervention they could continue to develop and grow.
They have and do.
I think that "Education-Planning A Siege" (chapters 5-10) was by far the most useful and informative chapters of the book. There are tips on how to approach a meeting, ideas on keeping log books and what to do if your child's needs are not being met. It also listed what your rights are as a parent-and your child's rights as a student. I think that these chapters would be useful to ANY parent of a child who requires any special services. In other words-these chapters are for helpful for anyone navigating the waters of special education. I would however add my own special tip
"When preparing for any educational meeting, it is wise not to experiment with your "personal touch" eyebrow shaper-as shaving off half of an eyebrow does not project the image of a capable parent." but that's just me...
I was very disappointed in the way the book addresses "DIET" (chapter26) We have eating issues in our household. Texture, smell, color, all play a role in my children's eating habits. I would like information or tips on HOW to address these issues. Instead, it appears that this chapter is mostly based on the assumption that autistic people have problems with malabsorption, food allergies and celiac disease. This is absolutely untrue.
While autistic people can and do have food allergies-just like everyone else.it should NEVER be assumed that.they walk hand in hand. There were too many statements in this chapter and not enough tips. It is one thing to say "Remove such and such from their diet" or "It will take a few days for them to adjust" but to not explain HOW to do these things leaves a gaping hole. I would love suggestions on how to expand on my children's menu of five things without causing anxiety attacks. I'd like to make it easy for the kids as well..
In reviewing this book, I skimmed a lot of chapters, and focused mainly on the things that are pertinent to us now. I found some very good information. I am sure that as my girl grows, I will be able to find some more useful tips to get us through things like puberty and high school. There is plenty of useful and good information to look for.
I have to say that I don't like the title of the book. When we were first going through diagnosis with my son nine years ago, I would have been happy for just ten good tips on what to do in certain situations. Tips to me are help, ideas, strategies for accomplishing something. This book in my opinion, offered more statements than tips. Yes, ideas are good-but you need follow through-HOW to implement the ideas would be a start. I thought the book lacked that.
Would I recommend this book? Yes-but only to a parent that is not new to diagnosis. For even though the author warns of contradictions in the introduction-it is hard to remember that when reading the tips. Some of the tips read as fact. If I didn't know what I do of autism,(and it is still very little after nine years) I might not use the book as recommended. Instead, I might accept everything as written and wind up very confused. For the rest of us, who have some experience with autism, I'd say it was worth reading. There is something in it for everyone. You just have to look.
For anyone interested in the boys book-Jen of "Autism the King and Eye" wrote a thorough post on it here.