Grandparents and “Love on the Spectrum”

“Love on the Spectrum” is a Netflix reality series that chronicles the dating lives of a few adults – from 20s to 50s - with autism and who are searching for true love. I like the series and I recommend it. But there are some notable buts.

It’s not unusual for grandparents to be safe and understanding confidants (even more so than parents) for their grandchildren regarding all sorts of issues, including romance. Thus we have a special opportunity to provide words and wisdom based on age and experience. Some of us will have that opportunity for our grandchildren who are on the spectrum – so it is important for us to be prepared.

“Love on the Spectrum,” in spite of its flaws, is a good vehicle for enhancing our own education. My favorite review of the show was written by Sara Luterman who is on the spectrum. Here’s the final paragraph of her review:

“Love on the Spectrum” probably won’t educate anyone about autism, or even about the realities of autistic dating. It isn’t science. But if you want to watch a dating show in which everyone is treated with kindness, you might want to add it to your Netflix queue.

All of her review is similarly well-conceived and written. Early in the review she says, “Unlike most reality television, the production crew isn’t trying to stir up drama. No one gets voted off the island. No one is told to pack their anime figurines and go. Although I was not completely pleased with ‘Love on the Spectrum,’ it is kind, and I respect the creators’ good intentions.”

But throughout the review she confirms that the problem (as with virtually all shows and books about specific persons with autism) is that the show will cause viewers to believe that these specific persons accurately represent autism, when, in fact, autism is different in everyone.

And she points out some of the show’s embarrassing and incorrect implications: “In one particularly galling moment, the production staff ask Sharnae and Jimmy, an autistic couple who are moving in together, if they have ‘consummated their relationship’ — to which they sort of laugh and confirm that they have. They are a couple in their 20s. They are moving in together. They sleep in the same bed. For any readers in doubt, I can assure you: Autistic people have sex, just like anybody else. Jimmy and Sharnae have had sex. It was a bizarre question and supremely uncomfortable to watch.”

What, including watching “Love on the Spectrum,” can we autism grandparents do in order to be valuable confidants to our grandchildren? Three basic things:

1. Understand that most persons on the spectrum yearn to have a loving, life partner – and that many of them view this as a major challenge.
   

2. Educate ourselves regarding romance, sex, and autism. Here are four (of many) websites that have good information: autismspeaks.org, spectrumnews.org, researchautism.org, and raisingchildren.net.au
   

3. Without revealing confidences, keep our grandchildren’s parents informed about our involvement as confidants.

Romance, usually confused and intertwined with sex, is of course, like hunger and thirst, an extremely compelling biological force within almost everyone who has reached adolescence, including our grandchildren on the spectrum. It doesn’t go away, it’s usually not readily discussed, and it can be emotionally consuming. We autism grandparents can provide comfort, understanding, and wisdom – often in a way that parents can’t.

Here’s the link to Sara’s full review.

Autism Grandparents and Independent Living Skills

We of course hope that our grandchildren will eventually learn how to live independently, and we grandparents can be especially helpful with our autism grandchildren. Basically, whenever they are in our care, we can look for and embrace learning opportunities – and the younger the better. And whether or not they are good candidates for future independent living, they can still learn skills.

Independent living skills can be grouped into ten categories: health (medication management, sexuality, etc.); safety (at home and in the community); career/employment; self-advocacy; socialization (friends, communication, processing verbal and non-verbal cues, etc.); financial management; community involvement (restaurants, events, places of worship, etc.); transportation (including appropriate behavior); leisure (recreation, team activities, etc.); household (eating, cleaning, laundry, etc.).

Although some communities offer actual classes taught by trained and certified professionals, we autism grandparents can also be important and productive “teachers.” When our grandchildren are with us, learning opportunities can be found almost everywhere, for example: putting clothes into the washing machine, cracking eggs for cooking, using the remote control for the television, opening an umbrella, inserting the credit card at the store, selecting fruit at the grocery store, and on and on. We can look for opportunities to attempt to teach our grandchildren skills that they don’t yet have.

Three guidelines are usually helpful. One is to use positive reinforcement and congratulatory encouragement – and avoid negative comments. “I’m so proud of you for trying! I bet you’ll do even better next time!” A second is to teach the skill in its normal situation. For example, you can do “pretend” purchases with play money at home, but even better is involvement in a real store. A third is to use visual supports such as pictures, checklists, charts, etc. For example, put a star on a picture of a washing machine each time the clothes are loaded correctly.

Grandparents are sometimes better suited than parents for this sort of life skills education simply because our lives can be less hectic than those of our grandchildren’s parents. Often we are retired and don’t face the normal everyday challenges that confront working parents. We usually care for our grandchildren on a part-time basis rather than 24/7. And we of course have the advantage of the wisdom that comes with already having raised children. On the other hand, autism parents are constantly bombarded by the challenges of autism as well as their jobs and the learning curve for being parents.

A final key for teaching independent learning skills is practice, practice, practice. No matter how many times our grandchild practices crossing the street, more practice is still helpful.

If you can, it is helpful to document learning opportunities and chart the progress. This will not only help you keep up with the progress levels, but will also be a great vehicle for sharing the information with your grandchild’s parents, teachers, therapists, etc.

Autism Speaks (www.autismspeaks.org) offers a free, comprehensive “Community-Based Skills Assessment” instrument that’s available for download on the website. It’s for use for persons age 12 and up. It’s EXTREMELY comprehensive (54 pages), and has graphs, charts, scoresheets, etc. Although the document is way too exhaustive for my use, you may want to take a look. Perhaps it will be a source for productive ideas for your specific situation.

Information that Can be Helpful for our Autistic Grandchildren

I’ve discovered a website that not only provides all sorts of information and guidance regarding autism and its challenges, but does so in a well-organized and highly accessible manner. It’s the website of the Child Mind Institute: www.childmind.org.

“The mission of the Child Mind Institute, founded in 2009 by Dr. Harold S. Koplewicz, Brooke Garber Neidich and Debra Perelman, is to: Offer best-in-class evidence-based clinical care. Engage the global scientific community in visionary research to discover more effective treatments.”

When you go to the website, simply search “autism” and you’ll find a wealth of information — all of which can be helpful to us autism grandparents in our caretaking roles and of course that we can tell our grandchildren’s parents about. There are over 60 “guides” and more than 700 articles.

Click on “Complete Guide to Autism” and you’ll find 13 topics including Sensory Issues, Rigid Eating Habits, Wandering, Medication, and others. And each topic is accompanied by lots of helpful information, guidance, and recommendations.

For example, the Sensory Issues section addresses such things as screaming when their faces get wet, and putting inedible things in their mouths.

The Rigid Eating Habits section talks about preferences for soft foods or crunchy foods, how to rule out GI problems, techniques for tackling various mealtime issues, and more.

The Wandering section includes things such as guidance on how to make our home safe and how to guard against wandering/eloping.

The Medication section begins with this: “There is no medication for the symptoms of autism.” But it provides information about medicines that are often prescribed to lessen symptoms, and advises that all have concerning side effects. It states that Risperdal, for example, is widely used to treat children who are aggressive, but it comes with very significant side effects.

The website is searchable such that you can find most any topic of concern, and robust enough that you can explore and learn for hours.

I especially like that the Child Mind Institute is science-based rather than anecdotal evidence-based. And I like this introductory information regarding autism: Autism is a neurodevelopmental disability that starts in utero, isn’t caused by vaccines or bad parenting, and, due to a broad spectrum of symptoms, manifests differently in everyone.

The website of the Child Mind Institute is one of my new go-to sources for information and guidance regarding my caretaking responsibilities for my granddaughter, and also as I point my granddaughter’s parents to reliable information.