Speech and Language Problems in Autism Spectrum Disorders
Barry Gordon, MD, PhD The Johns Hopkins Medical Institution
A Neurologist's Persective/A Parent's Perspective
Problems with speech and language are one of the defining characteristics of the Autism Spectrum Disorders. However, the difficulties that individuals with autism have with speech and language are very heterogenous and probably have a number of different causes or contributing factors, even in the same individual. My colleagues and I have been trying for some time both to investigate the speech and language problems that can occur in autism and to develop possible treatments for them. In addition, I am the father of a nonverbal 14 year old with autism. What follows is a general overview of my perspective on these problems and how they can be assessed and approached for what treatment is possible. Any actual assessment and treatment plan of any particular individual needs to be far more detailed and follow much more detailed logic than this overview allows. However, I am hopeful that it will still be useful for helping parents and teachers interpret what is wrong, what is right, and what can be done to possibly make things better for such individuals.
Normal Speech and Language
The fullest expression of normal human speech and language requires the desire or intent to communicate something. Also, in its fullest form, it also requires an appreciation of what the other individual understands about a situation and how they are supposed to react to what is being communicated. As the next stage beyond the formulation of an intent or goal in communication, speech and language normally require a mental representation of the message (semantics), next, a representation of the message in terms of words (mentally), and, finally, an articulation of the mental words as physical sounds (articulation of speech). Other ways of expressing mental words are possible, such as gesture (including sign language) or typing. Messages may also have an emotional component that, in English, is signaled by changes in the volume or pitch. Comprehension of speech and language is normally done through sound. This requires paying attention to the sounds, then being able to decipher the sounds in terms of words, then being able to understand the words in terms of intended meanings, and, finally, appreciating the meanings in terms of intentions, actions, or what have you. Vision (perception of gestures and signs or of printed words) and touch (Braille) can also be used as alternative or additional routes into the perception of letters and words.
Impairments in Individuals with Autism
Individuals with autism can have problems with any or all of these aspects involved in producing or understanding speech and language. In particular, for example, because of their deficits in appreciating social situations, they may not feel any need to communicate and may very well not have any understanding of how other people might respond to a communicated message. Individuals with autism frequently appear to have deficits in paying attention to auditory information. They frequently have to be trained to pay attention to sounds. Even when they are paying attention, many individuals with autism seem to have difficulty in decoding what sounds mean and in matching them to words or thoughts. In some individuals with autism, this may be because they actually have difficulties with words and thoughts themselves. In others, it may be more because of a mapping problem. Individuals with autism frequently have difficulties with articulation, often as part of a broader problem of difficulty with oral-motor functions (movements of the lips and tongue and associated breath control). On the plus side, however, individuals with autism are frequently very good with paying attention and appreciating visual materials. Therefore, the visual route is often one way of getting access to their minds and giving them a way of expressing themselves, in turn.
In any given individual, which particular problems they have and which problems are hampering them most in any particular stage of development can only be determined by a careful assessment. Standardized testing can help to some extent, but it requires careful administration and interpretation, in part, because many standardized tests were not developed with a consideration of the kinds of deficits that individuals with autism may have. Therefore, both the administration and the interpretation of such tests may be problematic because of the unusual pattern of performance. To give just one example, because of their markedly restricted interests, individuals with autism may only rarely show any particular verbal ability and may never show the ability when placed in an unusual testing situation with an unfamiliar examiner. In such a case, the reports of parents and teachers who are more familiar with the child’s capabilities can provide an important clue to what is possible for them and what is not.
In our research and educational program, we try to construct for each child an individualized map of their abilities and disabilities. Is the child aware that he or she is being spoken to? Do they ever try to communicate by any means? Are they echolalic (that is, do they repeat sounds or words spoken to them)? Echolalia, for example, is a clue that the child can perceive speech and articulate speech, so any problems that they may be having with speech and language must be beyond those levels.
Individuals with autism may have problems impeding their development of speech and language that are well outside the scope of traditional speech and language therapy (such as social deficits) or, at the very least, in the very frontiers of clinical knowledge as to appropriate treatment (developmental articulation disorders). Parents and teachers are confronted by a bewildering range of options and apparent philosophies of treatment of these individuals. However, what really matters most is the empathy, energy, and flexibility of the particular therapist or therapists. In many cases, for example, therapists with seemingly very different philosophies will have surprisingly similar treatment plans because of the realities of the particular individual they deal with.
Research Points to Genetic Link in Autism.
John Donvan and Caren Zucker ABC News
Scientists have long known that people with autism have brains that work differently -- their brain activity doesn't follow the usual pathways for speech, thought or social interaction. Still, the lingering question has always been: why?
New research published in the online medical journal Nature today offers the best evidence yet that a major part of the answer is genetics.
For the first time, scientists have identified specific genetic mutations that lead to specific abnormalities in how brain cells communicate and carry messages in the brains of those with autism.
"The genes that were discovered appear to be involved in the development of the frontal lobe of the brain ... that is, involved in complex behavior such as social behavior and also abstract thought," said Dr. Geri Dawson, chief officer of Autism Speaks and co-author of the study. "So it helps us understand why people with autism have difficulty in the area of social interaction -- and also why they have a tendency to be so concrete and literal in their interpretation."
Autism, a neurodevelopmental disorder that impairs social interaction, communication and behavior, tends to run in families. According to the National Institutes of Health, families with one autistic child have a one in five chance of having a second child with the disorder.
Scientists have long suspected a genetic underpinning for autism, but have had difficulty finding the link. Previous studies in families with identical twins have found that when one twin has autism, the odds are relatively strong that the other will too.
But the latest research -- one of the largest studies to date -- goes beyond twin studies, using cutting edge technology to examine and compare the DNA from more than 12,000 individuals affected by autism. Scientists pooled data together to gather a sample large enough.
Research Holds Promise for Future Cure
By comparing the DNA of those with and without autism, researchers were able to identify several genes related to autism. Scientists say that autism, a complex disorder, could be caused by as many as 50 genes.
The findings point researchers in the right direction toward developing drugs to treat the disorder.
"What we're discovering in this study is that these genes appear to be affecting similar biochemical pathways in the brain, and so then, if we can develop drugs that can help to repair or restore that pathway, this eventually could be extremely helpful as a treatment," said Dawson.
While it won't come overnight, this research opens the door to understanding the genetic mysteries of autism.
"There are so many steps down the road before we can develop these medications," Dawson said. "But this is the first step -- and without this step, we would never get there."
Challenges Siblings of Children with Autism Face.
Amy Lennard Goehner Time
The "typically developing" siblings of autistic children are, in fact, the furthest thing from typical. Often, they are wiser and more mature than their age would suggest. And they have to be, given the myriad challenges they face: parental responsibility; a feeling of isolation from the rest of their family; confusion, fear, anger and embarrassment about their autistic sibling. And on top of all of it, guilt for having these feelings.
A great way for kids to feel "normal" is to meet other siblings of autistic children, which they can do at sibling workshops. "The workshops give these kids the opportunity to realize they're not alone," Snyder-Vogel says. "[We play] a lot of games that help them interact and problem-solve with peers. Kids don't even realize they're getting support."
Siblings will commonly have negative feelings some might never connect or want to connect with their autistic siblings but the good news is that typical siblings often turn out to be more compassionate and caring than average. "These siblings have seen what it's like to have a hard time in life," says Sandra Harris, executive director of Rutgers University's Douglass Developmental Disabilities Center, a program for people with autism spectrum disorders and their families.
Here are some of the issues that most frequently confront typical siblings and their families with advice from professionals.
Challenge #1: "Why won't he play with me?"
For younger siblings of autistic children, one of their first doses of reality usually comes when their older brother or sister won't play. "The child on the [autism] spectrum may seem indifferent or have a meltdown when the sibling tries to interact," says Rutgers' Harris.
Seven-year-old Adam, whose autistic brother Jacob is 11, says, "I can't really play games with Jacob like I can with my cousin Eric [also 11]. Jacob likes to play games on the computer — but by himself, not with me. He gets too angry if he loses and then doesn't want to play." Adam's father, Paul, says soberly, "I'm sure Eric represents the brother Adam might have had."
Solution: Find common ground
Parents can start by telling the typical sibling that his brother or sister "is doing the best he can, and here are some things you can do with him," says Judy Levy, director of social work at the Kennedy Krieger Institute. "Maybe in the future he'll be able to learn to play with you in other ways, but right now this is what he can do."
Harris encourages parents to "find ways in which the siblings can relate [or] share an interest." That can be something very simple, as Elliot learned at an early age. "It turns out my brothers [Benjamin and Aaron] are really ticklish," says Elliot. "Tickling was a good way to bond with them, and for them to show affection back by laughing and wanting it again." (And again and again — and again.)
Challenge #2: "It's not fair!"
Every parent has heard his or her child say, "It's not fair!" But for families with autistic and typical siblings, "not fair" is the reality, when it comes to one child being treated differently from the other. Martin Bounds has one autistic child, Charlie, 13, and one typical child, Alex, 15, about whom Bounds says, "He'd get very upset when he would bump his knee or complain of feeling sick. He thought we weren't sufficiently concerned about him, in the spirit of 'I could be over here dying, and all you care about is Charlie.'"
That may be overstatement, but such sentiments often stem from legitimate gripes. Bounds recalls when he and his wife attended an important fund-raiser for Charlie three years ago, on the same day Alex rode in an annual bike race. "Alex won the race for his age group and was really upset when we were not there to greet him at the finish line," says Bounds. "As much as you try to balance schedules, as parents of an autistic child, you have to basically accept that you are going to have moments when you feel you have cheated your other children, and those moments are awful."
Solution: Create special time
Harris urges parents to set aside alone-time with their typical kids every week. "Private time can even [include] riding in the car to pick up the laundry," she says, "but since [the child is] with Daddy, [he or she is] the focus of his attention."
Some kids, like Elliot, develop new hobbies as a way to spend time with a parent. "Gardening was something I could do with just my mom — it was never easy to get my mom to myself," he says. Elliot began gardening five years ago; he's now a junior judge at flower shows and grows about 330 varieties at home, including the 170 seedlings he has hybridized.
For single parents, however, eking out one-on-one time can be a daunting task. As a widowed mom, I know firsthand — we do the best we can with the time we have. Single dad Ron Barth says his autistic 9-year-old, Daniel, "dominates everything, so I have to make special moments with Nicole [age 15], like taking her shopping — without Daniel." But, says Barth, "There aren't enough of those moments."
Challenge #3: "I'm scared!"
Some autistic children are aggressive, which can be scary and dangerous, especially for younger kids. And parents can't possibly keep an eye on their kids every second — which is about the amount of time it took for one child I interviewed to get squirted in the eyes with Windex by her younger autistic brother. (She survived just fine.) Even my son Nate, who isn't aggressive but is twice the size of Joey, often hugs Joey — tight. Very tight. Around the neck. When Joey yells "MOM!" I've learned to tell the difference between Mom, can you help me find my Gameboy? and MOM, he's choking me!
Solution: Find a safe haven
"I tell parents to have a 'safe place,' usually the child's room, where the typical child can go while an adult handles the behavior problem," says Harris. "Then, as soon as they can, the parents should comfort the typical child and help him or her understand what happened."
Harris also suggests that parents develop an "intervention plan" to teach the child with autism alternate behaviors — such as asking to be left alone, or using words, cards or a special gesture — when he or she feels upset. "Kids with autism can learn to go their room, sit in a beanbag chair, or do something else that helps them calm themselves," says Harris.
Challenge #4: "He's so embarrassing!"
It's common for siblings to feel embarrassed by their autistic brother or sister's behavior in public, or to be reluctant to bring their friends home. Kelly Reynolds, 21, says it can be difficult introducing her autistic brother, Will, to her friends: "It's hard to have a young child in an older kid's body. [Will] may go up to one of my girlfriends and sit on her on the couch — which probably would have been cute when he was five years old but he's 17 now," Reynolds says. "That can be hard because you can tell when someone feels awkward or scared or thrown off."
Solution: Encourage honesty — and laugh
"Interestingly, a lot of these [typical sibs] are more outspoken," says Levy of the Kennedy Krieger Institute. "They'll go up to people and say, 'Yes, that's my brother. He has special needs. Do you have any questions?'"
My son Joey is one of those kids. When he was 6, we were at a bus stop when Nate started jumping up and down and making weird noises — just being Nate. When Joey's friend started making fun of Nate, Joey got right in her face and said, "Do NOT make fun of my brother again! Everybody learns differently." They were my words coming from Joey's mouth.
Several parents I interviewed said a sense of humor is key. "Your typical child can see the humor in the actions of his autistic siblings," says Bounds, father to Charlie and Alex. "It's okay to talk about his or her 'weird brother' in a way that signals that you both know this isn't normal."
When Nate does something bizarre in public, which is just about whenever he's in public, Joey and I often give each other an Oh, my God! look and roll our eyes, which sort of says, "We're in this together."
Challenge #5: "I feel like the parent."
Angela Bryan-Brown, 15, says she often feels like a parent to her 14-year-old brother Alasdair. "You don't have a choice," says Angie. "You've got to help out, and your parents can only do so much. They're so stressed out." Angie's mom Florie Seery refers to Angie as "the third parent in the house" and "an old soul," a phrase I've heard often from other parents.
Elliot says of his siblings' disorder: "Even though I'm four years younger, it places me in the position of being the older brother."
Solution: Let sibs be children too
"It's a challenge for children to feel that sense of responsibility for their sibling," says Harris. "A wise parent works hard to temper that and to make the responsibilities fitting to the age of the siblings. An older sister can keep her brother entertained for half an hour because an older sister would typically do that to help out — but she's not a parent."
For young siblings, Harris suggests counseling them: "'It's wonderful to care about your brother, but you're my little boy too. Because your brother has trouble learning sometimes, he might need help from you, but you're not his mommy or daddy. We will take care of him when he needs help.' That kind of message reaffirms one's love and lifts that burden."
Challenge #6: The holidays
"Attending loud, busy social gatherings with new sights, sounds, smells, intrusive relatives and strange places overwhelms the best of us, let alone those with sensitive sensory systems," says Dr. Raun Melmed of the Southwest Autism Research and Resource Center. "Of course, when the child gets overwhelmed and melts down, so do the siblings and parents."
"In short, holidays suck, especially the ones you spend outside your own home," says dad, Bounds. "They're full of the most dreaded thing in an autistic life — unstructured time. People get together with relatives and friends and talk — which is sort of hard to do when your child has your sister-in-law's cat by the throat and is about to put him in the food processor."
Solution: Ask family members to help
Harris suggests that parents "create a rotating team of adults. Each person spends a half-hour with the child, so that parents and siblings aren't trapped, and the child doesn't have to be exposed to the chaos of the party. Cousins and aunts can take a turn."
Siblings, however, should be spared. "The typically developing kid wants the holiday to come. She's off from school, she's getting her present and she can't really enjoy that" if she's expected to take care of her autistic brother or sister, says social worker Snyder-Vogel.
Challenge #7: In adulthood, the sibs will become "parents"
Someday, inevitably, the sibling of an autistic child will most likely take on the role of guardian and advocate. "You're basically at some point going to be their parent," says Kelly Reynolds, 21. "Anyone I want to marry has to take that into account. In some ways you kind of feel like you already have a kid. ... For me, it's kind of a deal-breaker when someone can't really get along with my brother. He's such a big part of my life."
Solution: Discuss future plans with adult children
Parents should talk about financial plans and any care arrangements that have been made, once typical siblings are old enough, says Harris in a recent article for the Autism Society of America. But this isn't a discussion to initiate with younger children — unless they bring the topic up on their own.
Many of the children I interviewed showed deep concern for their autistic brothers and sisters. And nearly all of the professionals and doctors I talked with said that a disproportionate number of their students and residents were siblings of people with autism. "I'm very interested in trying to help find a cure," says 15-year-old Elliot, who closely follows news about the disorder. "I'd just like to get a neat little pill someday for my siblings that they can pop in with their apple juice and hopefully be normal."
Activities to promote coping
• Maintain as close to normal routine as possible
• Maintain communication between sibling and patient through pictures, written letters, tape- recording messages, phone conversations
• If part exchange special items between healthy sibling and parents, as well as healthy sibling and patients
• Create individual time and attention for healthy children
• Communicate to healthy sibling of scheduled departures and returns
• Attend siblings support groups and camps