Counseling Today, Features

Supporting families on their autism journeys

By Lindsey Phillips May 1, 2020

Maria Davis-Pierre, a licensed mental health counselor (LMHC) in Lake Worth, Florida, first suspected her daughter might be on the autism spectrum when she was 6 months old and showed signs of sensory issues. Then at 10 months, her daughter, who had been saying simple words such as “mama,” “dada” and “ball,” suddenly stopped speaking. When Davis-Pierre and her husband tried to get their daughter to mimic them saying the words, she acted as if she had forgotten them. As a therapist, Davis-Pierre understood the importance of early intervention, so she was proactive about getting her daughter a diagnosis. But it wasn’t easy.

Her pediatrician referred her to health professionals who specialized in developmental delays in infants and toddlers. They tested her daughter and thought she had autism spectrum disorder (ASD), but because she was still so young (around 18 months), they didn’t feel comfortable officially diagnosing her. They recommended she see a pediatric neurologist.

After more tests (which cost the family thousands of dollars out of pocket), the pediatric neurologist agreed about the presence of ASD but was also uncomfortable officially diagnosing the child at such a young age. Davis-Pierre told the doctor she was going to sit in his office every day until her daughter got a diagnosis. One week later, that finally happened.

Davis-Pierre thought the next steps would be easy, especially given that both she and her husband are in the health care field. But what she experienced was more frustration.

“At no point — even with the neurologist — was there a check-in with the parent: ‘OK, this is the diagnosis. This is what happens next,’” Davis-Pierre recalls. “It was, ‘OK, here’s your paperwork. This is the diagnosis. Now, go figure it out.’” According to Davis-Pierre, the health care professionals didn’t provide her family with resources or give any consideration to how the family’s culture would factor into their daughter’s treatment.

When Davis-Pierre spoke with other parents of children on the autism spectrum, she found out that this treatment was the norm. And it left her — and the other parents — feeling overwhelmed.

This experience prompted Davis-Pierre, an American Counseling Association member, 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 website GoodTherapy, Janeen Herskovitz, an LMHC in Ponte Vedra Beach, Florida, points out four areas in which counseling can help parents of children with ASD: adjusting to the diagnosis (which is often traumatic for parents), learning parenting skills, staying connected to their partners, and managing stress. Professional counselors can also help families prepare for developmental transitions, learn to effectively communicate with one another and extended family, and navigate cultural barriers.

Working through developmental transitions

ASD “is a neurodevelopmental disability, which means at different developmental stages, our clients are going to run into different developmental barriers, and they’re going to need us as counselors,” says Chris Abildgaard, a licensed professional counselor and director of the Social Learning Center in Cheshire, Connecticut. So, it’s important for counselors to understand where families are on their journeys, he points out. Is the family adjusting to the diagnosis? Are they struggling to communicate with their child? Are they helping a child through puberty? Counselors should also prepare to help families with life milestones such as going to prom, getting a driver’s license or grieving a death, Abildgaard adds.

Some families experience grief when they first learn about the ASD diagnosis, says Michael Hannon, an assistant professor of counseling at Montclair State University in New Jersey. These families will be reconciling a new reality and having to let go of certain elements of the relationship they expected to have with their child. “It’s really about [the family] learning to adjust to the needs, strengths, capacity, and some challenges of the people they love living with autism,” he adds.

Another challenging transition for parents and caregivers is when the child enters adulthood. Parents have likely been involved in every aspect of the child’s life, especially in the school system, so it is a significant adjustment when the child takes over this responsibility, Davis-Pierre says. She helps ease this transition by having parents teach their children to advocate for themselves before they reach adulthood. The more parents involve children with ASD in the day-to-day decisions about their lives and school, the more they realize that their children are capable of advocating for themselves, she says.

Abildgaard, an ACA member who specializes in ASD (and author of the 2013 Counseling Today article “Processing the ‘whole’ with clients on the autism spectrum”), has noticed that families sometimes push their child to do something that the child isn’t ready for or doesn’t want. For example, parents often ask him how they can make their child have a friend. Counselors need to educate parents that relationships take time and that individuals on the spectrum may not fully understand the intricacies of relationships and friendships. They will need support and coaching in this area well into their late teens, early 20s or beyond, he says.

Counselors can also help parents make plans and prepare for certain life events and developmental transitions, Abildgaard says. He finds visuals useful in helping families with a child on the spectrum to process events. Recently, he had a family who was going on a trip to a large city. He brought out his whiteboard and on one side wrote down all the thoughts and feelings the parents were having about the upcoming trip, such as feeling anxious that their child would have a tantrum and run from them. Then, Abildgaard asked the parents to consider their child’s perspective and why he might have a tantrum. On the other side of the whiteboard, he wrote down the child’s thoughts and feelings, such as being overwhelmed by all the lights and sounds.

This activity helped the parents realize the link between their own thoughts, emotions and behaviors and those of their child. It also started a discussion about proactive strategies the parents could take to decrease the likelihood of their child experiencing sensory overload. This, in turn, lowered their anxiety about the trip, Abildgaard says.

Helping families stay connected

Having a child with autism affects the entire family system, Abildgaard says. 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 don’t typically preemptively discuss the possibility of a having a child with a disability, Davis-Pierre notes. So, when a child is first diagnosed with autism, parents often have to reassess the roles, expectations, responsibilities and core values of the family, she says.

Counselors may also have to coach families through complicated life events such as divorce. Abildgaard, an adjunct professor in the Department of Special Education at the University of Saint Joseph, reminds counselors that regardless of the situations that families bring to them, it is important to break these situations down into manageable parts for the clients.

When the parents of a client with ASD were going through a divorce, Abildgaard, a nationally certified school psychologist, brainstormed with the parents how best to explain the situation to their son. Abildgaard also learned from the client’s school that the child had been making comments about the divorce there. Abildgaard says his role as a counselor was to help the client process and express his feelings about the divorce. To do this, he said, “Tell me some things your eyes are noticing that are different at home.” He made his language concrete and specific, which allowed the child with ASD to talk about what he had been noticing, such as his parents arguing more. The boy also said he was scared to talk about these things with his parents, so he and Abildgaard worked through his anxiety together.

Then, Abildgaard brought the entire family into his office to discuss these issues. He chose to have them come in during the morning hours when his office would be quiet so the family would be more comfortable and not feel rushed or distracted.

Balancing the parenting of both neurotypical and neurodiverse siblings is another common challenge that Hannon and Davis-Pierre hear about from their clients. They try to help parents learn how to better communicate with their children and to maximize and be intentional about the time they spend with each child.

Hannon, a licensed associate counselor in New Jersey, uses empathizing strategies to help parents understand what their neurotypical child is feeling. For instance, he asks, “What would your neurotypical child say about this experience right now?” and “What would the child say about how you attend to the sibling with autism compared to how you attend to his or her needs?” This exercise allows parent to empathize and reconcile some outstanding issues with their neurotypical children, he explains.

Davis-Pierre’s clients also report struggling to know how to engage with their neurodiverse children. “We’re so used to looking for [the child to verbalize] … the actual feeling that we’re not looking at the behavior of what the child is showing,” she says.

She has parents role-play to gain perspective on what the child might be thinking or feeling and to increase awareness of behavioral patterns. (For example, Davis-Pierre has noticed that her daughter expresses happiness by flapping her arms and spinning in circles.) If appropriate, she has the child role-play with the parent, but if that is not possible, Davis-Pierre does it herself. To increase understanding, parents can also keep a behavioral journal or use the picture exchange communication system, which allows individuals with little or no verbal communication to present a feeling card to communicate their feelings, Davis-Pierre adds.

Children on the spectrum pick up on their parents’ and caregivers’ emotions more often than people think, Abildgaard points out. However, if they do sense these emotions, they often don’t know what to do with them. Children on the spectrum may appear to be ignoring the person or emotion, but in many cases, they just don’t have the language or perspective-taking ability to process the emotion and the “right” response to it, he explains.

So, Abildgaard works with parents to help them process their own emotions and then explain those emotions to their children so they aren’t left to interpret them on their own. In fact, parents can overtly model how to handle certain emotions such as anger or frustration. Abildgaard often suggests that parents (especially those with younger children on the spectrum) put themselves in “time out” to show their children that even adults need breaks.

Cultural implications

According to a 2014 report from the Centers for Disease Control and Prevention, 1 in 59 children in the United States have been identified with ASD. But this number doesn’t take into consideration cultural and racial implications such as delayed diagnosis. According to a 2019 news report on Spectrum, which bills itself as “the leading source of news and opinion on autism research,” black children with autism are often diagnosed later than white children, misdiagnosed more frequently with other conditions such as behavioral problems or intellectual disability, and underrepresented in studies of autism.

Hannon attributes the disparities in diagnosis rates to 1) inequalities in access to health care, 2) mistrust of health care systems among people of color and 3) greater misdiagnosis of symptoms in minority children as behavioral rather than developmental.

Davis-Pierre says the history of racism and discrimination in U.S. health care may persuade some black families not to be completely honest with health care professionals when discussing their children because they fear their children will be taken away. For example, frustration and exhaustion are normal responses for families caring for a child on the autism spectrum, perhaps leading someone to say or think to themselves in a particular moment, “I just can’t do this another day.” But many black families fear serious repercussions should they admit to such passing thoughts with a counselor, Davis-Pierre explains.

Even the treatments families choose for their children are often informed by one’s culture. Applied behavior analysis (ABA) aims to help individuals on the spectrum increase behaviors that are helpful and reduce behaviors that may be harmful to them by positively reinforcing desired behaviors. Debate has swirled, however, over whether ABA is helpful or harmful. According to a 2016 article on Spectrum, some have criticized the therapy for being too harsh in how it corrects maladaptive behaviors and for attempting to make people on the spectrum “normal” instead of advocating for neurodiversity.

But for some families, Davis-Pierre says, ABA makes sense. For example, a black child spinning in circles and banging his head against something in public will often be viewed differently than would a white child who exhibits the same behavior. In this instance, ABA can help protect the black child by helping him learn to replace the maladaptive behavior — one that could put him in danger — with a more socially accepted behavior, Davis-Pierre explains.

The harsh reality is that black people often have to operate differently in public settings because of prejudice and racism, she continues. So, 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 Self-Care Affirmation Journal and Autism in Black, also finds that clinicians often don’t respect the culture of the home when treating children who are on the spectrum. A client once told Davis-Pierre that she had a therapist come into her home and not remove their shoes despite seeing a place for them by the front door. This act made the parent feel disrespected, and she no longer wanted the therapist in her house working with her child.

Another of Davis-Pierre’s clients was upset by a therapist who had made a decision involving her child without consulting the mother first. While the therapist and child were working together in the family’s home, the child wet himself. The therapist wanted to help the parents by changing the child herself. When the mother discovered that the therapist had gone through her child’s clothes drawers to find clean underwear, she felt as if the therapist had been snooping.

Abildgaard says his role as a counselor is to help clients on the autism spectrum adapt to different social situations and understand social context and social norms for particular settings and cultures. Counselors need to be aware of clients’ cultural and religious norms before instilling certain perceived social skills such as maintaining eye contact, he says. For example, as Abildgaard points out, some Asian cultures make eye contact only with certain people or in certain situations. So, counselors should understand the whole child before prioritizing what social skills or competences are most relevant to focus on in session, he asserts.

Religious beliefs can sometimes pose another barrier to seeking treatment. For instance, Davis-Pierre says, people in the black community are often taught to pray about their problems and not to discuss problems with anyone outside of the family. Counselors may assume that families who aren’t willing or enthusiastic participants in therapy are resistant, but as she points out, they may actually be having an internal struggle between seeking counseling and feeling that they are still maintaining their faith in God.

Davis-Pierre often uses genograms to help clients identify family patterns, such as other family members with a developmental disorder, or cultural values that have been passed along that no longer work for the family. Through genograms, she has noticed that her clients’ families often inherit a pattern of keeping secrets that hurts, rather than helps, the family dynamic. Davis-Pierre acknowledges that even she had a difficult time explaining to her extended family why she and her husband are so vocal about their daughter being on the autism spectrum.

Hannon and Davis-Pierre say that counselors have to be brave and willing to talk about clients’ and families’ cultures and about inequalities based on race and ability status. Starting this conversation can be as simple as including a question such as “What cultural traditions should I take into consideration?” on the intake form, Davis-Pierre says. This question shows that the clinician is already thinking about how culture affects treatment, she explains.

Supporting dads

Abildgaard argues that fathers are often overlooked when thinking about an autistic individual’s support network, so mental health professionals must do a better job of incorporating dads into the therapeutic process. He has noticed that mothers with children on the spectrum are often more proactive about independently finding and supporting each other, whereas fathers, even though they are involved in their children’s care, don’t tend to form support groups on their own. Abildgaard suggests that counselors could offer focused support services such as fathers’ groups or “dad’s night out” events to help these men learn from and bond with other fathers in similar situations.

Such support groups matter when it comes to providing care to individuals on the spectrum. Hannon, an ACA member who specializes in the psychosocial aspects of autism on fathers and families, often co-leads a group for fathers who have children with ASD. These men have reported that just being connected with other fathers who share similar experiences can be life-changing. In these groups, dads find others who speak their language and understand their journeys, which makes them feel heard, Hannon says. Groups also help fathers become more aware of their own needs and challenges and discover effective coping and adjustment strategies, he adds.

Fathers also spend a significant amount of time thinking about their children’s prognoses, their children’s futures, and the ways they can prepare their children to live full lives, Hannon says. In his dissertation, he studied the experiences of black American fathers of individuals with autism. At the ACA 2018 Conference & Expo, Hannon presented his findings from a grounded theory study on how diverse fathers orient themselves to their children’s diagnoses. Fathers often want to help their children who are on the spectrum, he continues, but if they have been raised with certain gendered expectations, counselors may need to take a few extra steps to help these dads increase their efficacy with day-to-day activities such as helping with temper tantrums.

Counselors may also need to help fathers retain focus on their emotional journeys because men are often task-oriented in how they solve problems, Hannon points out. Also, because men have often been socialized to engage only with specific emotions such as lust and anger, counselors may have to dig deeper with them to reveal the other underlying emotions. For example, counselors could suggest, “You’re angry, but it sounds like the source of your anger is fear for your child’s safety.”

Generational pushback

Parents sometimes face generational challenges in caring for their children. Hannon describes a common scenario that fathers often share with him: They leave their children in their grandparents’ care, providing suggestions for ways to best communicate with the children and guidance on particular eating preferences. To which the grandparents might respond, “We’re not doing any of that. We’ll do what we want with our grandchildren. They just need a good talking to.”

Such scenarios often leave parents of children on the spectrum feeling frustrated. If the parents and grandparents have a good, healthy relationship, then counselors can help parents learn to communicate openly and honestly with the grandparents. Hannon advises parents to lead with love and acceptance before critiquing the grandparents’ interaction with the children. Parents can first emphasize how the grandparents love their grandchildren before saying that they just want to show them additional, special ways to show love to a grandchild on the spectrum. 

When Abildgaard works with grandparents who need help accepting their grandchild’s diagnosis of ASD, he starts by saying that he could use the grandparents’ help to allow him to better understand their grandchild. Once this barrier is broken down, he finds that grandparents tend to ask more questions and start honest dialogues about grandchildren who are on the spectrum. 

Counselors can also help clients realize that while it is OK to establish boundaries with extended family, they should aim to set realistic boundaries that honor both the child on the spectrum and the family, Davis-Pierre says. For example, if a family depends on grandparents to provide child care, then the family must be particularly careful in setting boundaries. At the same time, the family can still have a respectful conversation with the grandparents about the needs of the child and family.

Adjusting language

Abildgaard’s clients with ASD sometimes complain that their parents always ask the same question after school: “How was your day?” Because, from their perspective, their days are always the same, the children wonder why their parents ask something they already know the answer to. 

Abildgaard advises parents to instead use concrete language such as “Tell me two good things about your day and one thing you would have changed.” This phrasing gets to the heart of what parents actually want to know from their child and makes the conversation more productive, he says. 

Abildgaard is also careful about the language he uses with clients with ASD and their families. Recently, the mother of one of his clients (a boy in sixth grade) told him that her son ran out of his classroom at school. When the boy walked into his office, Abildgaard said, “Tell me two good things about your day and one thing you would have changed.” This prompted the client to tell Abildgaard he had run out of his classroom.

After admitting this, the boy looked at Abildgaard, seemingly waiting to be chastised. Instead, Abildgaard asked the boy, “What do you think I’m thinking right now?”

The boy responded, “You’re thinking you are mad at me.”

Abildgaard drew a thought bubble on a whiteboard and wrote the client’s thought inside the bubble. Then he drew another thought bubble and wrote what he was actually thinking: “I’m wondering what made him run out of the room.”

The boy’s body language instantly relaxed. This exchange took Abildgaard out of the authoritarian role and shifted the conversation from focusing on the problem to focusing on how to solve the problem.

Similarly, Hannon recommends that counselors focus on strengths, and not just deficits and challenges, when working with families who have a child on the spectrum. He makes a point of asking parents about the victories they have had that week or month.

This question prompted one of Hannon’s clients to share how his son had used appropriate language and displayed empathy — a skill the child had previously struggled to demonstrate — that week.

The child’s mother had said, “I’m going to run through the shower.”

The child on the spectrum responded, “No, you can’t do that because you’re going to fall.”

Even though the child hadn’t grasped the true meaning of his mother’s words, he had shown concern for his mother and responded appropriately, which was a huge victory for this family, Hannon says.

Support often makes all the difference. Davis-Pierre and her family’s autism journey may have had a challenging start, but they eventually found health care providers who worked with them as a team. With this support, Davis-Pierre and her husband were able to stop focusing so much on the challenges and instead start enjoying their child for who she is.

 

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Lindsey Phillips is a contributing writer to Counseling Today and a UX content strategist. Contact her at hello@lindseynphillips.com or through her website at lindseynphillips.com.

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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.

2 Comments

  1. Lucy

    I understand the importance of early intervention in children. What is categorically remiss is the lack of resources and intervention for adults who have been diagnosed. It would be nice to have an article like this that relates to the adult experience of autism and the impact on families when the parent is the autistic one.

    Reply

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