Maria Davis-Pierre, a licensed mental health advisor (LMHC) in Lake Worth, Florida, first suspected that her daughter might be on the autism spectrum at age 6 and had signs of sensory problems. Then, at 10 months, her daughter, who had said simple words like "mom", "dada" and "ball", suddenly stopped speaking. When Davis-Pierre and her husband tried to get their daughter to imitate the words, she pretended to forget them. As a therapist, Davis-Pierre understood the importance of early intervention and was proactive in getting her daughter diagnosed. But it was not easy.
Her pediatrician referred her to healthcare professionals who had specialized in delayed development in infants and young children. They tested their daughter and thought they had autism spectrum disorder (ASD), but because they were so young (around 18 months), they didn't feel comfortable diagnosing them officially. They recommended that she see a pediatric neurologist.
After further testing (which cost the family thousands of dollars out of his own pocket), the pediatric neurologist agreed to the presence of ASD, but also felt uncomfortable with officially diagnosing the child at such a young age. Davis-Pierre told the doctor that she would sit in his office every day until her daughter was diagnosed. This finally happened a week later.
Davis-Pierre thought the next steps would be easy, especially given that both she and her husband are in healthcare. But what she experienced was more frustration.
“Even with the neurologist, there was never a check-in with the parent: 'OK, that's the diagnosis. That happens next, ”recalls Davis-Pierre. "It was" OK, here are your documents. This is the diagnosis. Find out now. “According to Davis-Pierre, family health professionals did not provide resources or take into account how family culture would affect their daughter's treatment.
When Davis-Pierre spoke to other parents of children in the autism spectrum, she found that this treatment was the norm. And she – and the other parents – felt overwhelmed.
This experience prompted Davis-Pierre, a member of the American Counseling Association, to start Autism in Black, a private practice that specializes in helping black parents of children with autism get the help they need.
In a blog post on the GoodTherapy website, Janeen Herskovitz, LMHC in Ponte Vedra Beach, Florida, points out four areas in which counseling can help parents of children with ASD: Adaptation to diagnosis (which is often traumatic for parents ), Learning parenting skills, staying connected with their partners and dealing with stress. Professional advisors can also help families prepare for developmental transitions, communicate effectively with each other and with large families, and overcome cultural barriers.
Working through development transitions
ASD "is a neurological development disorder, which means that at different stages of development, our customers will encounter different development barriers and will need us as consultants," said Chris Abildgaard, a licensed professional consultant and director of the Social Learning Center in Cheshire, Connecticut. It is therefore important for counselors to understand where families are on their travels, he emphasizes. Does the family adapt to the diagnosis? Are you having trouble communicating with your child? Do you help a child in puberty? Counselors should also prepare to help families with life milestones like prom, getting a driving license, or grieving for death, Abildgaard adds.
Some families experience grief when they first learn about ASD diagnosis, says Michael Hannon, assistant professor of counseling at Montclair State University in New Jersey. These families will reconcile a new reality and will have to let go of certain elements of the relationship they had expected with their child. "It's really about learning [the family] to adapt to the needs, strengths, skills and some challenges of the people who love to live with autism," he adds.
Another challenging transition for parents and caregivers is the child's entry into adulthood. The parents were probably involved in all aspects of the child's life, especially the school system. Therefore, it is a significant adjustment when the child takes on this responsibility, says Davis-Pierre. It helps facilitate this transition by teaching parents to help themselves before they reach adulthood. The more parents involve children with ASD in their daily decisions about their life and school, the more they realize that their children are able to stand up for themselves, she says.
Abildgaard, an ACA member specializing in ASD (and author of the 2013 Counseling Today article, "Processing the Whole with Autism Spectrum Clients"), has found that families sometimes force their child to do something the child is not ready or does not want to. For example, parents often ask him how they can get their child to have a boyfriend. Counselors must inform parents that relationships take time and that people on the spectrum may not fully understand the intricacies of relationships and friendships. They will need support and coaching in this area until their late teens, early 20s or beyond, he says.
Consultants can also help parents make plans and prepare for certain life events and developmental changes, says Abildgaard. He finds visuals useful to help families with a child in the spectrum process events. He recently had a family who went on a trip to a big city. He took out his whiteboard and, on one side, wrote down all the thoughts and feelings that the parents had about the upcoming trip, such as the fear that their child would have a tantrum and run away from them. Then Abildgaard asked the parents to think about their child's perspective and why they might have a tantrum. On the other side of the whiteboard, he wrote down the child's thoughts and feelings, for example that he was overwhelmed by all the lights and sounds .
This activity helped parents understand the connection between their own thoughts, emotions and behaviors and those of their child. A discussion has also started on proactive strategies that parents could take to reduce the likelihood of sensory overload in their child. This in turn reduced her fear of the trip, says Abildgaard.
Helping families to stay connected
Having a child with autism affects the entire family system, says Abildgaard. It affects how parents interact with each other, how parents interact with each of their children, how siblings interact with each other, and how the family interacts with extended family members.
Couples usually do not have a preventive discussion about the possibility of having a child with a disability, notes Davis-Pierre. When a child is diagnosed with autism for the first time, parents often have to reevaluate the family's roles, expectations, responsibilities, and core values, she says.
Counselors may also need to coach families through complicated life events, such as divorce. Abildgaard, associate professor at the Department of Special Education at the University of Saint Joseph, reminds the counselors that regardless of the situations that families bring with them, it is important for clients to break these situations down into manageable parts.
When a client's parents divorced with ASD, Abildgaard, a state-certified school psychologist, considered with the parents how best to explain the situation to their son. Abildgaard also learned from the client's school that the child had commented on the divorce there. Abildgaard says that his role as an advisor was to help the client with the processing and to express his feelings about the divorce. He said, "Tell me a few things that notice your eyes and that are different at home." He made his language concrete and specific, which allowed the child with ASD to talk about what he had noticed, like his Parents argued more. The boy also said he was afraid to talk to his parents about these things, so he and Abildgaard worked together on his fear.
Then Abildgaard brought the whole family to his office to discuss these questions. He decided to let her come in in the morning when his office would be quiet so that the family felt more comfortable and didn't feel rushed or distracted.
The balance between parenting of neurotypical and neurodiverse siblings is another common challenge that Hannon and Davis-Pierre hear from their customers. They try to help parents communicate better with their children and to maximize and intentionally spend the time they spend with each child.
Hannon, a licensed associate counselor in New Jersey, uses empathization strategies to help parents understand what their neurotypical child feels. For example, he asks, "What would your neurotypical child say about this experience?" and "What would the child say about how you take care of the sibling with autism compared to how you take care of his needs?" This exercise enables parents to identify and align some open questions with their neurotypical children, he explains.
Davis-Pierre's customers also report having difficulties with their neurodiverse children. "We are so used to looking for [the child to verbalize] … the real feeling that we are not looking at the behavior of what the child is showing," she says.
She has a role-playing role played by the parents to gain a perspective of what the child might think or feel and to raise awareness of behavior patterns. (For example, Davis-Pierre has noticed that her daughter expresses her happiness by fluttering her arms and spinning in a circle.) She may have the children's role-playing game with the parents, but if this is not possible, Davis- Pierre it yourself. To improve understanding, parents can also keep a behavioral diary or use the image exchange communication system, which allows people with little or no verbal communication to present a feeling card to communicate their feelings, adds Davis-Pierre.
Children in the spectrum perceive the emotions of their parents and caregivers more often than people think, Abildgaard emphasizes. However, when they feel these emotions, they often don't know what to do with them. Children on the spectrum seem to ignore the person or emotion, but in many cases they simply don't have the linguistic or perspective ability to process the emotion and the "right" response to it, he explains.
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So Abildgaard works with the parents to help them process their own emotions and then explain them to their children so that they don't have to interpret them on their own. In fact, parents can openly model how to deal with certain emotions such as anger or frustration. Abildgaard often suggests that parents (especially those with younger children in the spectrum) take time out to show their children that adults also need breaks.
Cultural Implications
According to a 2014 report by the Centers for Disease Control and Prevention, 1 in 59 children in the United States was identified with ASD. However, this number does not take into account cultural and racist effects like the late diagnosis. According to a 2019 Spectrum news report that calls itself the “leading source of news and opinions on autism research,” black children with autism are often diagnosed later than white children, with other conditions such as behavioral or intellectual problems being more often misdiagnosed Disability and underrepresented in studies on autism.
Hannon attributes the differences in the diagnosis rates to 1) inequalities in access to health care, 2) distrust of health systems among colored people and 3) a greater misdiagnosis of symptoms in minority children than behavioral rather than developmental.
Davis-Pierre says that the history of racism and health care discrimination in the United States may cause some black families to avoid being honest with health professionals when discussing their children because they fear that their children will be taken away. For example, frustration and exhaustion are normal reactions for families caring for a child in the autism spectrum, and may lead to someone saying or thinking to themselves at a certain moment: "I just can't do it another day to do." But many black families fear serious consequences if they admit such temporary thoughts with a counselor, explains Davis-Pierre.
Even the treatments families choose for their children are often influenced by their own culture. Applied Behavior Analysis (ABA) is designed to help people across the spectrum improve helpful behaviors and reduce behaviors that can be harmful to them by positively reinforcing the behaviors they want. However, the debate about whether ABA is helpful or harmful has got around. According to a 2016 article on Spectrum, some criticized the therapy as too hard to correct mismatch behavior and as an attempt to make people in the spectrum “normal” instead of advocating neurodiversity.
But for some families, Davis-Pierre says, ABA makes sense. For example, a black child spinning in a circle and banging his head against something in public is often seen differently than a white child who shows the same behavior. In this case, ABA can help protect the black child by learning to replace poorly adapted behavior – one that could put him at risk – with more socially acceptable behavior, Davis-Pierre explains.
The harsh reality is that black people often have to act differently in public due to prejudice and racism, she continues. Therefore, she advises families to consider their child's behavior and safety when choosing the best treatment for their child's autism.
Davis-Pierre, author of the Self-Care Affirmation Journal and Autism in Black, also notes that clinicians often do not respect the culture of the home when treating children on the spectrum. A client once told Davis-Pierre that a therapist had come into her house and hadn't taken off her shoes even though she saw a place for her at the front door. This did not make the parents feel respected and she no longer wanted the therapist to work with her child in her home.
Another Davis-Pierre client was upset about a therapist who had made a decision that involved their child without first consulting the mother. While the therapist and the child worked together in the family home, the child got wet. The therapist wanted to help the parents by changing the child herself. When the mother discovered that the therapist had searched her child's clothes drawers to find clean underwear, she felt as if the therapist had been sniffing.
Abildgaard says his role as a counselor is to help clients in the autism spectrum adapt to different social situations and understand the social context and norms for specific environments and cultures. Consultants need to be aware of clients' cultural and religious norms before imparting certain perceived social skills, such as maintaining eye contact, he says. For example, as Abildgaard emphasizes, some Asian cultures only have eye contact with certain people or in certain situations. So counselors should understand the whole child before prioritizing which social skills or competencies they should focus on most in the session, he claims.
Religious beliefs can sometimes be another obstacle to seeking treatment. For example, says Davis-Pierre, people in the black community are often taught to pray about their problems and not to discuss problems with someone outside the family. Counselors may assume that families who are not willing or enthusiastic therapy participants are resistant, but as she emphasizes, they may actually have an internal struggle between seeking counseling and feeling that they still believe in God.
Davis-Pierre often uses genograms to help clients identify family patterns like other family members with a developmental disorder or traditional cultural values that no longer work for the family. She found through genograms that her clients' families often inherit a pattern of secrecy that violates rather than supports family dynamics. Davis-Pierre admits that even she found it difficult to explain to her extended family why she and her husband talk so loudly that their daughter is on the autism spectrum.
Hannon and Davis-Pierre say that counselors must be brave and willing to speak about client and family cultures, as well as inequalities based on race and skill status. Starting this conversation can be as simple as inserting a question like "Which cultural traditions should I take into account?". On the admission form says Davis-Pierre. This question shows that the clinician is already thinking about how culture affects treatment, she explains.
Supporting Fathers
Abildgaard argues that fathers are often overlooked when they think about an autistic person's support network. Therefore, mental health professionals need to better involve fathers in the therapeutic process. He found that mothers with children on the spectrum are often more proactive when it comes to finding and supporting each other independently, while fathers, even though they are involved in caring for their children, do not tend to form support groups themselves. Abildgaard suggests that counselors could offer targeted support services, such as father groups or "Dad's Night Out" events, to help these men learn from and connect with other fathers in similar situations.
Such self-help groups are important when it comes to serving individuals in the spectrum. Hannon, an ACA member who specializes in the psychosocial aspects of autism in fathers and families, often leads a group for fathers with children with ASD. These men have reported that communicating with other fathers who share similar experiences can be life-changing. In these groups, fathers find others who speak their language and understand their travels, which makes them feel heard, says Hannon. Groups also help fathers to become more aware of their own needs and challenges, and to discover effective coping and adaptation strategies, he adds.
Fathers also spend a lot of time thinking about their children's prognoses, their children's future, and ways they can prepare their children for a fulfilling life, says Hannon. In his dissertation, he studied the experiences of black American fathers of people with autism. At the ACA 2018 Conference & Expo, Hannon presented his results from a well-founded theoretical study of how different fathers are based on the diagnoses of their children. Fathers often want to help their children in the spectrum, he continues, but if they are raised with certain gender expectations, counselors may need to take some additional steps to help these fathers increase their effectiveness in everyday activities, such as Tantrums help.
Consultants may also need to help fathers stay focused on their emotional journeys, as men are often task-oriented in solving problems, Hannon emphasizes. Since men have often been socialized to deal only with certain emotions such as lust and anger, counselors may need to dig deeper with them to reveal the other underlying emotions. For example, counselors might suggest, "You are angry, but it sounds like the source of your anger is the fear of your child's safety."
Generational recoil
Parents sometimes face generation-related challenges in caring for their children. Hannon describes a common scenario that fathers often share with him: they leave their children in the care of their grandparents and give suggestions for optimal communication with the children as well as instructions on certain eating habits. The grandparents could answer: "We don't do any of this. We'll do what we want with our grandchildren. They just need a good conversation."
Such scenarios often leave parents of children in frustration behind. If the parents and grandparents have a good, healthy relationship, counselors can help parents communicate openly and honestly with the grandparents. Hannon advises parents to lead with love and acceptance before criticizing the grandparents' interaction with the children. Parents can first emphasize how the grandparents love their grandchildren before saying that they only want to show them additional, special ways to show love to a grandchild in the spectrum.
When Abildgaard works with grandparents who need help to accept their grandson's ASD diagnosis, he first says that he could use the grandparents' help to better understand their grandchild. Once this barrier is overcome, he realizes that grandparents tend to ask more questions and start honest dialogues about grandchildren who are in the spectrum.
Consultants can also help clients recognize that while it is okay to set boundaries with the extended family, they should aim to set realistic boundaries that span both the child and the family honor, says Davis-Pierre. For example, if a family is dependent on grandparents to look after children, the family needs to be extra careful when it comes to setting limits. At the same time, the family can still have a respectful conversation with the grandparents about the needs of the child and the family.
Adapting the language
Abildgaard's clients with ASD sometimes complain that their parents always ask the same question after school: "How was your day?" Because their days are always the same from their point of view, the children wonder why their parents ask something that they already know the answer to.
Abildgaard advises parents to use a specific language instead, such as "Tell me two good things about your day and one thing you would have changed". This wording summarizes what parents really want to know about their child and makes the conversation more productive, he says.
Abildgaard also pays attention to the language he uses for customers with ASD and their families. Recently, the mother of one of his clients (a boy in sixth grade) told him that her son had run out of his classroom at school. When the boy entered his office, Abildgaard said, "Tell me two good things about your day and one thing that you would have changed." This prompted the client to tell Abildgaard that he had left his classroom.
After the boy admitted this, he looked at Abildgaard and seemed to be waiting to be punished. Instead, Abildgaard asked the boy, "What are you thinking, I'm thinking?"
The boy replied, "You think you're mad at me."
Abildgaard drew a thought bubble on a whiteboard and wrote the customer's thoughts in the bubble. Then he drew another thought bubble and wrote what he actually thought: "I wonder why he ran out of the room."
The boy's body language relaxed immediately. This exchange took Abildgaard out of the authoritarian role and shifted the conversation from concentrating on the problem to concentrating on solving the problem.
Similarly, Hannon recommends that counselors focus on strengths rather than just deficits and challenges when working with families with a child in the spectrum. He asks the parents about the victories they have achieved this week or this month.
This question prompted one of Hannon's clients to tell how his son had used appropriate language and shown empathy this week – a skill that the child had previously had difficulty demonstrating.
The child's mother had said: "I will run through the shower."
The child in the spectrum replied: "No, you cannot because you will fall."
Although the child did not understand the true meaning of his mother's words, he was concerned about his mother and responded appropriately, which was a great victory for this family, Hannon says.
Support often makes the difference. Davis-Pierre and her family's autism trip may have had a challenging start, but they eventually found healthcare providers to work with them as a team. With this support, Davis-Pierre and her husband were able to stop concentrating so much on the challenges and instead enjoy their child as it is.
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Lindsey Phillips is the author of Counseling Today and a UX content strategist. Contact them at [email protected] or through their website at lindseynphillips.com.
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