This Isn’t Mars After All Parents and Children After the Diagnosis of Autism Features
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Features  |   April 01, 2003
This Isn’t Mars After All
Author Notes
  • Margaret Ervin, is a contributing writer to The ASHA Leader.
    Margaret Ervin, is a contributing writer to The ASHA Leader.×
Article Information
Special Populations / Autism Spectrum / Features
Features   |   April 01, 2003
This Isn’t Mars After All
The ASHA Leader, April 2003, Vol. 8, 6-7. doi:10.1044/leader.FTR1.08082003.6
The ASHA Leader, April 2003, Vol. 8, 6-7. doi:10.1044/leader.FTR1.08082003.6
We start in the place before gesture,“ says Carla Brooks, a private practitioner in Seattle, WA, who specializes in working with children with autism. Imagine what it means for a parent day in and day out, when spoken language is absent, when even pointing, smiling, and nodding are rare. There may be little communication at all other than tantrums—the universal language for “I am furious. This is too much for me.”
For the child at 24 months or so who has been diagnosed with autism and significant developmental delays, the primary needs are keeping him safe and understanding what he wants. These children are often overwhelmed by transition. Many of them don’t like to be touched.
“If you are just trying to keep them from running into the street, you can make things worse. Frequently they have no other way to communicate other than by screaming or being physical,” Brooks says. Needless to say, the parents of these children are beside themselves with frustration, fear, and helplessness.
“At the time of diagnosis, parents can feel like they’ve just been hit by a sledgehammer. It is overwhelming and devastating,” says Barry Prizant. For this reason, parental support is a big piece of his practice. A private practitioner in Providence, RI, Prizant has seen parents under the double stress of the child’s behavior and a frightening diagnosis. He spends a lot of time with families and often works with those who want a follow-up assessment. He and his wife, a clinical psychologist, also run weekend retreats for parents, in collaboration with an autism family support agency. An opportunity to attend is even offered free of cost to parents who cannot afford it.
Prizant describes his office as “a little cottage” where families can come in and spend half a day for a team assessment. In his weekend retreats, 60 parents find a network of support that they might otherwise not have found. He says the parents of older children are tremendously generous in supporting the parents of younger children. The retreats offer concurrent discussion groups on a variety of topics, and many first-time attendees go there for one of the only breathers they’ve had since their child was born.
Private practitioners like Prizant and Brooks, who are experts in autism spectrum disorders, play an important role in the diagnosis of autism and in the support of parents after diagnosis. Brooks says she got into private practice while working at the University of Washington’s Child Development Center in Seattle, where her job was to assess children with speech and language impairments. As more children with autism came through in the mid-1980s, Brooks moved into private practice because she realized there was an increasing need for speech-language pathologists with experience in autism to take the lead in both diagnostic and treatment settings.
Prizant, a former researcher, does a lot of assessment, including follow-up assessment after diagnosis. Over the course of his career, he has been one of the profession’s outstanding leaders in best practice for SLPs working with children with autism. He wrote his master’s thesis and doctoral dissertation on autism in the 1970s, but says that to this day specialized training for SLPs in autism is rare.
Yet SLPs’ skills are critical to the diagnosis of autism. “I do agree that the increase in the incidence of autism is very real,” says Prizant, “but I have also seen many more misdiagnosed kids in the past several years.” As an example, he describes spending a half-day with a family who did not feel comfortable with the diagnosis of autism they had received from a hospital team. He says they turned out to be right. Their child, at 36 months, had receptive and expressive language impairment and sensory integration impairment, but not the degree of social impairment that Prizant describes as “the foundation of the autism diagnosis.” It is well-trained SLPs functioning as part of a team who have the expertise to tease apart the pieces of a complex disorder that involves both communication and social elements.
After the Diagnosis
Then there is the challenge of treatment after the diagnosis of autism has been made to the satisfaction of all involved—of where to go from that “place before gesture.” Brooks has a reassuring manner and a means of engaging both the parents and the child by starting with a favorite object. She has learned from years of observation that children with autism are drawn to a preferred object or activity. Trains are a popular toy with this population. Other popular toys are puzzles, Legos, letters, and numbers. All involve patterns—the parallel lines in the train tracks, the outlines of letters, the way pieces interlock. “A lot of kids have a real visual interest and strong visual-spatial skills,” says Brooks, “but there is no cookbook for what will work. I start with what the parents know. I always ask the parents, which toy or activity is your child going to like?”
Once the child has possession of his favorite thing, Brooks has a way into the child’s world. She calls her technique with these children ARIC, an acronym for moving from attention, to reaction, to interaction. “This part can take two sessions or two months,” Brooks says. The final step is moving to communication. “I build anticipation of the routine. Then I vary the routine by removing a piece of the pattern,” she explains. “If I then wait, they may attend to me, and I reward them for shifting their attention to me by providing them with the piece of the pattern that was missing.” Eventually, she works toward a gestural vocabulary, initially by teaching the child to hold out his hand, palm up, to receive the missing piece.
Brooks’ goal is replacing challenging behaviors with functional behaviors. Both she and Prizant stress a social communication approach rather than the traditional behaviorist approach. At a minimum, Brooks’ communication goals for the child are to point to request, give an object to request help with, and hold hand out palm up to show readiness to receive.
These are behavioral goals, but in the social communication approach, the means of reaching that goal are to start with the communication the child exhibits and to replace the communication that doesn’t work with communication that does work. Brooks works closely with the whole family so that parents can work with the children on the new behaviors and avoid rewarding the challenging behaviors. The same holds true for educating the child’s teachers.
“It isn’t always comfortable to think about how similar people with autism are to us,” says Prizant, but he believes treatment has to start from that thought. He says he does not like to think of people with autism as “anthropologists on Mars,” the metaphor coined by writer Oliver Sacks. “Even if they feel socially challenged, disconnected, and different,” Prizant says, “their feelings and impulses are very human.” There is certainly human communication in a child’s tantrum. It just isn’t the kind of communication that invites connection.
Parents often have more insight than anyone into their autistic child’s humanity, but don’t have the tools to help their child communicate. Ideally, all children with autism would have access to Prizant’s cottage or the soothing order of a playroom at Brooks’ practice. There, SLPs are enacting a space-time miracle by helping children with autism walk out of a place that can feel as far from human communication as Earth is from Mars.
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April 2003
Volume 8, Issue 8