Curious Incident

Several months ago a friend who teaches “special education” and whose students include mostly persons on the autism spectrum e-mailed me to say he’d seen a wonderful play and to recommend that I read the book from which the play was written: The Curious Incident of the Dog in the Night-time.

Which has now resulted in guilt.

I am a guilty autism grandparent – guilty of promoting (both wittingly and unwittingly) autism stereotypes. Such promotion causes unfair and inaccurate assumptions and judgments about specific persons on the autism spectrum. My lame excuse is that I am still an autism newbie. My granddaughter was diagnosed just 2 years ago. Certainly there are other “new” autism grandparents who share my guilt.

One of my current guilts is having said the following to other autism grandparents about Mark Haddon’s The Curious Incident of the Dog in the Night-time: “While this book focuses on only one specific person, it does help you understand that an autistic brain is often wired in ways that the rest of us can neither understand nor comprehend.” 

The Curious Incident of the Dog in the Night-time has received lots of praise and honors – both as a novel and as a play. I liked it very much. BUT, I now realize that this book as well as several other popular and fictional books and movies and television features that focus on autistic persons can and do result in their audiences arriving at opinions about autism that are usually inaccurate about specific persons. 

All of which begs the question: What do I do when another novel or movie is released about a fictional person with autism? I’m still sorting that out.

Meanwhile, here’s a link to my favorite “review” of The Curious Incident of the Dog in the Night-time: https://researchautism.org/book-review-the-curious-incident-of-the-dog-in-the-night-time/

This review, by Serena Shim, is featured on the website of OAR – Organization for Autism Research. Perhaps this review can help all of us autism grandparents as we encounter such works of fiction.

Don’t “Should” on Yourself

We all accept that having a child with autism is challenging. It is challenging because we often do not grow up knowing much about disabilities or how to be supportive, unless you grew up knowing someone. Parents have to learn how to not only understand the autism, which means lots of conversations with experts and the introduction of a whole new vocabulary, but it also means they have to learn to make decisions on behalf of their child. Decisions that they have never made before. So we can all agree, this life is challenging for families impacted by autism. Also, of course, very rewarding. 

Now, for grandparents, they get an extra layer of hard! You are in the role of being supportive to not only your child, but also the grandchild with autism. That was foreign territory for your child and my guess is that in most cases, it is new territory for you too. Adding to that, you are likely in a position where you provide care to the grandchild, have him/her over, and are working to develop that special grandparent-grandchild relationship. It is all a tall order! Yet, it is also an extremely rewarding and positive experience when there is help and guidance along the way. Here, I’d like to talk about how to support the activities and interests of a child with autism. No doubt many grandparents love to visit or have their grandchildren visit the home. This is great! However, grandparents may notice that the grandchild with autism seems, in some cases, a bit particular about what he/she wants to do with their time. This can be challenging to know how to navigate but my one quick tip is to try your best not to “should” on yourself at these times. 

We all have things that we should do like eating healthy, exercising, and managing stress. We strive to be at our best but know that at times, we will make mistakes and fall below our own expectations. Families and children impacted by autism have these same aspirations. 

However, for children with autism, these activities may not come as easily. This is for several reasons. First, one of the key diagnostic features of autism is a child’s limited and restricted interests. What this means is that many children with autism have a limited number of activities or preferences. This is why you may see a child with autism who likes to mostly play with string, or seems to only like to play with trains, or who watches the same videos repeatedly. This may look like an “obsession” to some but it is part of the autism spectrum. What therapists, teachers, and many parents work hard to do is to expand the interests of their child through programs at school and in the community. However, it is a significant challenge to overcome. Imagine for yourself being asked to stop liking football so much and watch hockey instead. You might think hockey is fine, but you really prefer football. If someone kept trying to switch the channel from football to hockey or kept wanting to take you to hockey games rather than football, you can see how this might be distressing. The difference between you and the kiddo with autism is that likely you have numerous activities you enjoy…so just imagine if the ONLY activity was football. How hard would that be to leave the one thing you really like and learn to try to like something new? Hard! 

This issue is also related to the language issues inherent in autism. It is not as easy as saying, “you should try out some art classes” to a child with autism in an attempt to suggest other activities the child could get engaged in. In fact, saying something like that to a parent of a child with autism can make them feel like you don’t think they are doing enough or it can make them feel isolated because so many do not understand how challenging it can be to get a child with autism to acquire new interests. It can be done and in most cases and there will be people in the child’s life trying to help them to do so, but keep in mind how hard it must be. 

So all that to say, as we interact around parents of children with autism, we may be thinking that there are a lot of “shoulds” that need to happen. We should like different foods, or we should get the child to exercise more, or we should give them different toys, but as stated earlier, should is a great concept, but a longer process.  

Visiting Group Homes Curing COVID-19

I have attached information for autism grandparents who visit grandchildren who are in group homes. The Covid-19 pandemic has caused all of us to do our best to protect ourselves and our grandchildren, and the attachment provides helpful information, especially regarding group homes. Grandparents will of course want to contact the group home to hear about its specific policies, and will also want to follow the CDC guidelines regarding wearing facemasks and social distancing. The attachment was developed by the American Bar Association, National Center for State Courts, and the National Guardianship Association. 

Covid-19 Pandemic Guidelines

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Download PDF • 296KB

I have also attached a short video for children on the importance of wearing a mask.This brief and informative video, developed by Tara Tuchel at Autism Little Learners, is meant to be shown to children to help them understand this important practice. It can be difficult and possibly confusing for a child to see his grandparent wearing a mask or to even understand why he/she has to wear one.