David E. Simpson, J.J. Hanley and Gordon Quinn. Refrigerator Mothers.

Fanlight Productions, 2002. Video, 53 minutes. $229. ISBN: 1-57295-346-2.

Reviewed by Anke Kriske, Autism Society of America—Massachusetts Chapter

A diagnosis of autism is hard for a family. It was even harder in the 1950s and 1960s, and even into the 1970s, because mothers were erroneously held accountable for the withdrawn state of their children. Refrigerator Mothers introduces some of those mothers who bore the brunt of medical ignorance. Women, especially educated women, were told they were aloof and withheld their love, damaging their children. This video will give viewers insight into the struggles of raising autistic children into adulthood, and help them to understand why so many parents are still angry at medical and mental health care professionals.

I work for the Autism Society of America--Massachusetts Chapter, a largely parent-run advocacy group. Sometimes I'm the first person with whom a parent speaks after a diagnosis or they call when they're frustrated with their school system or medical providers. The issues raised in the video are still relevant for the current generation of parents raising autistic children and they still haunt the elderly parents of the first generation of autistic adults. One of our former board members was deemed a refrigerator mother.

In Refrigerator Mothers, the women speak eloquently of their experiences. June Francis watched her son's personality fade away over the course of years, which she can document through photographs while he sits on Santa's lap, at first completely engaged in this Christmas ritual, and then growing ever more indifferent. As a young black mother, Dorothy Groomer was told her child couldn't be autistic because she was not white and presumably was not educated.

These women describe the devastation of autism compounded by the insensitivity of social workers, school principals, and medical care providers. Lorraine Roberts was told to blame her own parents for her supposed shortcomings as a mother. Marie Boldt was called psychotic. There are tears throughout the video as the parents tell of the psychological pain they endured and the frustration of not really being able to help their children. As the women look at old photographs and home movies of children, their devotion is obvious, and you wonder how it was possible to view these women as indifferent mothers.

Some of the children were remote and passive, and the mothers waited for some sign of recognition or affection, others were difficult to handle. One child would smear feces into the springs of his mattress or the air conditioner. His mother would sometimes use a toothbrush to clean up his room. Mothering these children is never easy. One mother threatened to kill herself; another said, "The only reason I lived was to keep my children alive."

Instead of focusing on the children, the mothers were the center of attention. They submitted to psychoanalysis because it was then popular. They were asked to search their own psyches for shortcomings by therapists who didn't seem to understand the inanity of their own questions--one mother was asked why she minded her child playing in the toilet. Their own input was not wanted, since, after all, everyone knew what caused autism.

This situation came about because autism was hijacked by Bruno Bettleheim, who felt that parents, particularly mothers, wanted to see their children dead. He was the self-appointed champion of autistic children and encouraged them to stomp or in other ways abuse an abstract figure called the lady to deal with the supposed pain they suffered at the hands of their mothers. Richard Pollak, Bettleheim's biographer, had a brother with autism who was treated by Bettleheim from 1943 to 1948. Steven Pollak died from a 35-foot fall while playing with his brother. Richard relates how in 1969, Bettleheim told him that Steven had committed suicide, which was the parents' fault, especially the mother's. Assigning blame was Bettleheim's modus operandi.

There were objections, of course, but as Robert Coles, M.D., who once praised Bettleheim in articles, now admits, "This was a closed totalitarian system... If you have any doubts or reservations, we have to bring you into the system." It wasn't until Dr. Bernard Rimland formally challenged Bettleheim's views in 1964 that a greater understanding of autism evolved and mothers were exonerated. Change, however, came slowly. Maria Mombille's son was born in 1975, and he was taken away from her for two years because a disciple of Bettleheim felt that "families are the worst place to grow up." The changes in the treatment for autism are not documented by the video. Current therapies are complicated and often controversial and impossible for a short film to detail.

The video helps to give autism historic perspective, which is sometimes lacking in modern debates about the best ways to treat autism. The mothers are still angry, and at times bitter, and rightfully so. There's a strong sense of vindication in the film, but there isn't a strong sense of hope. The autistic adults are seriously impaired still, and parents have to worry about the future, which is by no means assured. I'd like to say that these problems the mothers encountered are a thing of the past, but they're not. Parents still call to complain that their views are rejected, that they're not part of a team that will seek the best possible treatments for their son or daughter, even in situations where a child has a potential medical condition. Blame is still a factor. I received a call from a mother who was told she was responsible for her son's autism. The mother informed me she was a psychiatrist.

This is an excellent film for parents who want a greater perspective, and extremely important for health care professionals, social workers, and teachers to see what happens to parents and their children over time. Another strength of the film is that it shows the reality of autism. Autistic adults, unless they're extraordinary individuals like Temple Grandin, are generally invisible. The video shows rank and file adults who don't have savant qualities or possess Ph.D.s.

Initially, the rates for autism where thought to be 1 in 10,000. In the video, the autism rate is given as 1 in 500. Currently, the numbers we're using at ASA are 1 in 166. As Ms. Francis puts it, "I had this darling little boy, and I lost him..." We've lost a lot of children to autism, perhaps more than needed to be, by taking a wrong turn and losing years of research by assigning blame rather than looking for causes.