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!)
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.
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.
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.
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.
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.
“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.”
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.
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 . . .”
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.