How Do You Compare to Other Autism Grandparents?

If you were going to participate in a survey of autism grandparents today, what questions would you like to be asked? What would you like to ask other autism grandparents?

In 2010 the Interactive Autism Network (IAN) published findings from their survey of more than 2,600 autism grandparents from all 50 states.

IAN is careful to explain that the survey sample is not representative of the percentages of autism that exist in various demographics. IAN also explains that the survey findings have not gone through “peer review” or been featured in formal research publications. But the survey does provide information that confirms that we autism grandparents have meaningful roles in the lives of our grandchildren.

Following is information from the survey.

95% of the 2,600+ participants were Caucasian. 78% had educations that included at least some college. 77% were either retired or getting ready to retire. 83% of the participants were grandmothers (rather than grandfathers). And 77% of the participants had grandchildren who were 4-12 years old.

The participants were asked to rate (among 4 levels) how much they worry about their grandchild’s parent(s). Over half (57%) rated at the highest level: “a great deal.” They were also asked how well they (the grandparents) are coping, and 86% said either “fairly well” or “very well.” Only 2% said “not well at all.” [I wonder if today, 10 years later during COVID-19, the percentages for this question would be different.]

Who in your family was the first to notice that something was not “normal” about your grandchild? 30% of the survey participants said that they (the grandparents) were the first to notice.

How close do you live to your grandchild?

57% of the survey participants lived within 24 miles of their grandchildren. Almost 30% lived 100 or miles away.

How involved are you in the decisions about your grandchild’s treatments and therapies?

21% of the survey participants said “a lot.” Nearly 50% said “a little,” and nearly 30% said “none.”

Are you your grandchild’s primary babysitter? [I am.]

Only 17% of the survey participants said they are their grandchild’s main babysitter.

Do you spend money to help your grandchild? How much?

92% said they spend less than $100 per month on their grandchildren. And nearly half of those said they spend $0. [The survey participants’ answers to this question surprised me. I thought the financial contributions would have been greater. I wonder what the numbers are for the summer of 2020?]

IAN’s report included several of the narrative passages that the participants included. Some focused on significant challenges:

“My grandson is nine and is severely challenged by his autism,” one weary grandmother told us. “We are the main providers of respite for him, and as he’s gotten older the care has become more difficult. I compare this to getting hit by a train and continually dealing with trying to survive it. The biggest issues concerning the care are: He's not potty trained, he's non-verbal, and very physical. When he's upset, he'll have meltdowns where he'll bite, scratch, and pinch. Perhaps the biggest challenge is the continual need to keep him safe... He has no sense of danger at all, and requires constant watching.”

And others discussed good things:

“The relationship that I have with my grandson is one of my greatest joys. We have a special relationship… My heart nearly burst when he began saying my grandparent name, Baba. If I go for a visit, and he comes running and screaming 'Baba' with a smile as big as Texas, I feel so elated. I can't imagine my life without him. I love all my grandchildren, but he holds a special place in my heart.”

The survey provided a wonderfully heartening finding: nearly 90% of the participants said that autism has brought them and their adult child closer together.

It is certain that having a grandchild with autism can present challenges for our relationships with our adult children, but it is encouraging to know that those challenges produced closer relationships for the vast majority of the participants in this survey.

The survey report concludes with the following:

Grandparents participating in the IAN Grandparents of Children with ASD Survey have taught us so much, bringing new insights to researchers, professionals who work with people on the spectrum, and the entire autism community. We have learned what a significant role they play in identifying ASD in their grandchildren, and what tremendous contributions they make in terms of care giving, finances, moral support, and advocacy. They have shared their worries for their grandchildren on the autism spectrum, and for the children’s parents, their adult sons and daughters. They have beautifully described the contradictions inherent to ASD: how the diagnosis and its aftermath can be like “being hit by a train,” yet relationships with these grandchildren can be some of the most joyful they have ever known. In brief, anyone investigating ASD and its impact on families leaves the grandparent generation out at their peril.

Autism Grandparents and Controversies

Two years ago when Angelina’s formal diagnosis made me an official autism grandparent, I had some knowledge about the prevalence of autism, but I had zero awareness of autism controversies. But if you, like me, have any involvement in your grandchild’s life, you’ve already been confronted with at least a few controversies – some of which may have found you and your grandchild’s parents on opposite sides.

It can be helpful to us autism grandparents to be aware of some of the basic controversies – all of which have well-meaning perspectives on both sides – and to give thought to how we can best handle those that affect our personal situations.

The basic reasons for autism controversies – many of which are heated – are that the manifestations of autism are extremely diverse, the needs for research are extremely diverse, and the fundamental opinions about autism are also extremely diverse. Autism continues to be hard to define, continues to have no diagnosis based on blood tests or x-rays or other objective medical procedures, and continues to evoke emotion.

Following is my list of 10 autism controversies that we autism grandparents should be aware of – especially in relationship to how we interact with our grandchildren’s parents. (And I am very aware that using only a short paragraph to summarize any autism controversy can be highly controversial in itself!)

VACCINATIONS

How do you argue with a parent whose child was “perfectly normal” until she was vaccinated, after which followed regression and autism? How do you argue with lots of families who have the same experience? Or with noted celebrities who say the same thing? This is of course the autism controversy that is most visible among the general public – that vaccinations cause autism. And even though exhaustive scientific research has proven over and over again that vaccinations don’t cause autism, the anti-vaccination contingency persists. And if it were my child who went from pre-vaccination normal to post-vaccination autism I may feel the same way.

DENIAL

It is common for families to be in denial after receiving a diagnosis of autism. It is common for denial to persist even in the face of an exhaustive diagnosis by experienced specialists. Denial can persist for many years. But an absence of denial can more readily allow for helpful therapies.

CAUSES

It is common for families to “blame” someone or something for autism: poor parenting, stress, poor nutrition, television, cell phones, family dynamics, spankings, and on and on. We grandparents can be champions of the scientific data regarding blame: it has been proven that none of the above causes autism. The most recent research indicates that genetics is the most significant factor. And “genetics” means that autism is inherited based on the genome of a person or persons somewhere in the child’s direct family tree that spans many, many generations. Blaming a person or an event or an activity or a lifestyle isn’t helpful to a family dynamic, and we grandparents can be helpful by not encouraging such blame.

DIET

There are widespread opinions on the relationship of diet/nutrition to autism – including the belief that diet can cause or cure autism. But exhaustive scientific research is clear: diet doesn’t cause or cure autism, and there is no evidence that diet in itself can be therapeutic. What science does indicate is that autistic children/adults are more susceptible to gastrointestinal issues and eating disorders – issues that can cause pain and discomfort and malnutrition, etc. that in turn can be counterproductive to the autistic person’s development and emotional well being – just like with all of us: such issues are counterproductive to virtually all aspects of our lives.

THERAPY

ABA therapy (Applied Behavioral Analysis) is the most widely used and respected and researched and acclaimed therapy for children with autism. ABA therapy is organized around a child’s individual needs and uses a continual series of steps and rewards. But there are those who are adamantly opposed to it. The major opposition to ABA includes claims that its routines are cruel and/or that it tries to make children “normal” rather than accepting their neurodiversity. We autism grandparents should be aware that many other autism therapy systems have been established and that some of them are self-promoted by inaccurate and misleading claims and testimonials – including citing nonexistent research. We grandparents can help our grandchildren’s parents by offering to investigate when specific therapies are proposed for our grandchildren.

EDUCATION

“Inclusion” or not? Should our grandchild’s formal education be in a “normal” school, or should it be in a “special” setting? Is it better for our grandchild’s education to focus on academics or on social skills? Is it better to be among neurotypical schoolmates, or among schoolmates who have challenges? The answers are never easy and are always dependent on the dynamics of the individual child and family. But we grandparents need to be aware that this can be a contentious issue with strong opinions on every side.

DIFFERENCE OR DISORDER?

Terms such as “disorder” when referring to autism can be considered pejorative. There are highly contentious opinions on whether autism should be considered a disorder or simply a “difference.” Is autism a negative condition that needs to be repaired, or is autism a difference that should be celebrated? Should autism and its neurodiversity be respected as naturally different, or considered an abnormal condition in need of therapy and repair? The Autistic Self-Advocacy Network (ASAN) is a major national organization that is run totally by autistic persons. (Note: they adamantly use the term “autistic persons” rather than “persons with autism.”) ASAN professes the strong opinion that autism is unfairly and unproductively portrayed and researched and treated in ways that produce negative views about autistic persons. But the widespread and majority opinion outside of ASAN is that persons with autism can benefit most, and can lead the most productive lives, by receiving help and support grounded in proven practices. I do encourage autism grandparents to be aware of ASAN’s thoughts on this. Their website provides their “Position Statements.”

RESEARCH

As with most other types of research, autism research is terribly underfunded. The controversies surrounding autism research are what specific research should be funded and who should do it. For example, should there be research to detect autism in-vitro? Would this lead, as it has already done with Down’s syndrome, to termination of pregnancies? Should there be research to determine a “cure” for autism? (Current research shows that autism can’t be “cured.”) Should there be research regarding vaccinations causing autism? (Lots of significant research – all with the same definitive and conclusive result – has already been done.) And on and on. Why should research controversies matter to autism grandparents? Two reasons: first because our knowledge can be helpful when our grandchild’s parents engage us in discussion about autism research; and second because it can inform and flavor our own interactions with our grandchildren.

AUTISM ORGANIZATIONS

There are lots of local, regional, and national organizations and they have differences in the way they see and relate to autism. The sentence, “Show me an autism organization and I’ll show you at least one controversy,” is accurate. [And this includes the Autism Grandparents Club. The Club’s first exposure to controversy was an irate communication taking us to task for using the term “person with autism” rather than “autistic person.”] The bottom line for us autism grandparents is to understand that no matter which autism organizations we decide to help or be involved with, we may expose ourselves to criticism: “How can you support an autism organization that . . .”

SESAME STREET

The controversy connected with this beloved and wonderfully educational television show is Julia – the puppet character with autism who made her debut in 2015. The majority of the general public views Julia as a wonderful addition to “Sesame Street” – an example of the show’s trademark celebration of diversity and inclusion. The Autistic Self-Advocacy Network provided consultation and involvement with the introduction of Julia, but when the show began a partnership with Autism Speaks in 2019, ASAN broke its ties and discontinued its approval and believes that the Autism Speaks partnership has introduced “regressive and dangerous narratives” about autism. I happen to like Julia and “Sesame Street,” and although I do understand ASAN’s complaints, I’m not ready to dismiss Julia or the show. The main reason I list “Sesame Street” in this list of 10 autism controversies is to demonstrate that just about anything connected with autism attracts controversy – even a longtime unanimously heralded public television show.

MORAL OF THE STORY?

There are three morals for us grandparents. One is that we should be aware of the controversial nature of autism and expect, and be prepared, to be pulled into conversations about specific autism controversies. Second is that even though a little knowledge can often be dangerous, at least some knowledge, such as this list, can be helpful as we have discussions with our grandchildren’s parents and support group. And third is that both sides of every autism controversy are founded on the genuine feeling that that specific side is the most helpful side for persons with autism. No side of any issue intends to harm persons with autism, but just the opposite.

Five Websites that can be Helpful for Autism Grandparents

If you’re an autism grandparent like me, you’re regularly on the Internet searching for additional information and support, and you’ve learned that when you Google “autism,” a million websites are listed. And some of those websites have their own headings entitled “Resources” that list a million more websites. Where do you begin? Which websites can be most helpful? Is there information targeted specifically for grandparents?

The Autism Grandparents Club herewith begins an ongoing project of composing our own list of websites. We begin with just five. We don’t refer to them as the “best five” or “top five” or “most important five” or any other superlatives. These are simply the five websites that we’ve chosen to start our list.

AUTISM SPEAKS – This is arguably the biggest and most influential autism organization in the nation, and its robust website is comprehensive indeed. It even includes a guide for grandparents. Here is part of the organization’s “About” section: “Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the life span, for the needs of individuals with autism and their families. We do this through advocacy and support; increasing understanding and acceptance of people with autism; and advancing research into causes and better interventions for autism spectrum disorder and related conditions.”

AUTISM SOCIETY OF AMERICA – This organization has been around since before most folks had even heard of autism. The website offers comprehensive information and resources. “The Autism Society of America has been improving the lives of all affected by autism for over 50 years and envisions a world where individuals and families living with autism are able to maximize their quality of life, are treated with the highest level of dignity, and live in a society in which their talents and skills are appreciated and valued. We provide advocacy, education, information and referral, support, and community at national, state and local levels through our strong nationwide network of Affiliates.”

AUTISM SOCIETY OF [YOUR STATE OR LOCALITY] – The Autism Society of America has “local” chapters throughout the nation. Mine, the Autism Society of Central Virginia [ascv.org], provides a lot of information and resources on its website, and even offers a local grandparents support group: “For over 30 years, the Autism Society Central Virginia (ASCV) has been proud to serve as one of the region’s premier sources of education, advocacy, services, and support for individuals with autism, their families and friends, and professionals. . . Our mission is to improve the lives of all affected by autism by maximizing the self-sufficiency, independence, and quality of life for all living with autism. We are committed to meaningful participation and self-determination in all aspects of life for individuals on the autism spectrum and their families. Our vision for the future is that all individuals with autism receive early identification, appropriate therapies, and supports to achieve their highest potential and quality of life.”

GRANDPARENT AUTISM NETWORK – This all-volunteer organization provides direct service to Orange County, California, but its website resources can be of value nationwide. There is even information on how to start your own grandparent support group. “The Grandparent Autism Network informs grandparents about autism and the medical, educational, legal and social issues that affect their families, enabling them to share how they may improve the quality of life for their children and grandchildren. GAN is an all-volunteer organization with limited resources to expand beyond the 34 cities that comprise Orange County, California. We share information about our programs, projects and events and we invite grandparents in other areas to replicate them.”

AUTISM RESEARCH INSTITUTE – One of the early autism organizations, it continues to provide a lot of information about autism including symptoms, diagnosis, intervention, support, and even COVID-19 guidance: “Established in 1967 by psychologist and renowned father of modern autism research Dr. Bernard Rimland, ARI continues to pioneer in research, outreach, and cooperative efforts with other organizations worldwide. ARI advocates for the rights of people with ASD, and operates without funding from special-interest groups.”