When my husband and I first moved into our suburban community in the D.C. Metro Area, I was taken with the hypervigilance of parents and teachers in my community. Even in preschool, it seemed like every parent I knew had a child in occupational therapy, physical therapy or some form of early behavioral intervention to ensure their children were keeping up with their peers. Initially, I found it comical. I assumed the vigilance was due to societal pressure to raise competitive, Type A children. I wasn’t interested in placing that level of pressure on my children. However, I realized my attitude, for better or worse, was a product of my environment. As a child raised in the inner city, I didn’t really know anyone who suffered from a developmental disorder growing up. I knew “weird” kids or “quiet” kids, and I never met a “weird” kid who wasn’t expected to eventually “grow out of it.” As I have gotten older and my experience has diversified, I realize how dangerous that attitude can be to addressing mental illness or any developmental deficits in our children, particularly as it pertains to autism.
According to the Autism Society, “Autism spectrum disorder is a complex developmental disability, typically appearing during childhood and affecting a person’s ability to communicate and interact with others.” While, autism affects children of every race, our communities have disproportionate rates of misdiagnosis and late diagnosis. While everything from lack of access to medical care to community stigma may be the blame, it is clear we must make a change to improve the outcomes in prognosis for our children.
Recently, I had a candid conversation with a dear friend, phenomenal woman and mother of two children diagnosed with Autism Spectrum Disorder, Lola Dada-Olley. Mrs. Olley, an attorney and journalist, shared her experience recognizing the signs, getting treatment and emotionally coping with the diagnosis.
Q. Tell me a little about your family.
I have a five year old son and a three year old daughter in Kindergarten and Pre-K.
Q. When did you first realize something was wrong?
Maybe it was because he was my first baby, but I was very in tune with my son. He was super energetic and met his milestones for the most part. Around eighteen months, he was a little bit delayed verbally but he caught up. When he was about two and a half, we had a major life change that unearthed everything. We sold our house in Illinois and moved to Wisconsin. Literally around August 1, he was talking, answering questions, and he was bubbly. By the end of that month, something had drastically changed. The same questions you would ask before would get a blank stare or a stark one-word answer. He was very advanced in some areas before we left, he was learning English, Spanish and Portugeuse. What I have since learned from my little bubble of moms, is parts of an autistic child’s brain are often highly advanced before the onset of the autistic symptoms. My son has hyperlexia which is the opposite of dyslexia. There are some parts of his brain that are highly advanced, there are other parts that need support.
Q. For your son, it seems like the impetus was that big life change: the move. Is that typical?
Our son had a serious need for routine so it helped us see the change more. It would have masked itself in another situation. I first started seeing little things when I was pregnant with my daughter. His eye contact started changing but verbally, it didn’t change until the move.
“You are suddenly drafted into an army that’s different from other parents. Most of us enlist into the army of motherhood. Then there is a special unit you get drafted into that requires you to be even more hypervigilent than the “conventional” mom because your child needs extra support.”
Q. What steps did you take once you realized something was wrong?
I suspected it could be autism because I have a baby brother with autism. Now, they have support groups for siblings of kids with special needs. When I was growing up, I became like a second mom. I would do research on autism thinking it was for my brother, but it was really for my son that was coming. All the research I had done was on something called Applied Behavioral Analysis (ABA) therapy. I looked into ABA therapy in Wisconsin. What I didn’t know when I started my search is that Wisconsin has the best autism treatment in the United States because it is home to both a research center and treatment center rolled into one in a place called the Waisman Center. It was a like a triage for parents. You are suddenly drafted into an army thats different from other parents. Most of us enlist into the army of motherhood. Then there is a special unit you get drafted into that requires you to be even more hypervigilent than the “conventional” mom because your child needs extra support. There was a six month waiting list at the Waisman Center. We were only planning on being in Wisconsin for two years because of my husband’s MBA program. I had done enough research to know that the ages between 0 and 5 were crucial for early childhood and the longer we waited, the less favorable the outcome. A social worker recommended a private facility and as luck would have it, they had an opening in two weeks.
The psychologist, who is a sweetheart, I still talk to him today, told us: “It has been confirmed that your son is diagnosed with Autism Spectrum Disorder. This could just be a phase or it could be a lifelong battle. We don’t know yet because he is just two and a half. We do know your son is incredibly bright and gregarious and very compassionate and loving so we know he will be a delight to work with.” I cried, they gave me the kleenex and all that good stuff. I realized then that my brother was my greatest teacher. But for my brother, my son would have been languishing before I realized what was wrong.
Q. Once you got the diagnosis, what was next?
My son was diagnosed in the fall and by January, he had a team of in-home therapists set up. He was in therapy eight hours a day and six days a week. We did a half a day on Saturday and took Sundays off to go to church and rest as a family. Our in-home team consisted of 4 line therapists (the “in the trenches” therapists who would execute our son’s treatment plan), their supervisor, regional supervisors, a board certified behavioral analyst (in Wisconsin, this was a PhD), a pediatrician and developmental pediatrician. Six months in, he also had a speech and occupational therapist. We had a big team. Also, every week, a senior therapist would come to our house with the team to discuss what worked and what did not. People were constantly coming in and out of our house. Fortunately, our insurance covered forty hours of ABA. Research suggests that thirty hours and over yields the best outcome for kids on the spectrum.
Q. That sounds intense. How did you handle having all those people in your home?
When my son started therapy, I was still nursing my daughter who was under a year old. You have to be vulnerable when you get a diagnosis like this, the last thing you want to do is go into denial because you are hurting your child. The sooner they can get support, the better off their lives will be. I immediately went into a mindset of, I no longer look at my kids as five year olds and three year olds. There is not a day that goes by when I don’t think about a sixteen and eighteen year old version of what my babies will look like. I am very well aware that the clock is ticking.
Q. What role did you play in your son’s treatment?
You hear stories about parents and you don’t want to be a helicopter parent, but you need to be very involved. It’s a fine line. We would be in the room. In the sit downs, we would add on what we saw outside of the therapy room. We stayed in constant contact. When someone is constantly in your house, you are always talking about your kids. Once he got used to the therapy, we would let them do their thing. We had to realize social skills involve other people, not just Mom and Dad. Our son called his therapists his “big friends.”
“You have to be vulnerable when you get a diagnosis like this, the last thing you want to do is go into denial because you are hurting your child. The sooner they can get support, the better off their lives will be. I immediately went into a mindset of, I no longer look at my kids as five year olds and three year olds. There is not a day that goes by when I don’t think about a sixteen and eighteen year old version of what my babies will look like. I am very well aware that the clock is ticking.”
Q. Your daughter was also diagnosed with Autism Spectrum Disorder. Was her path to diagnosis similar to your son’s diagnosis?
A month into therapy, our son started showing progress which was a big blessing. However, our daughter started pulling her hair out of her head. We took her to the pediatrician and determined at thirteen months old, she had severe allergies. She was allergic to dairy, eggs, fish, nuts, dogs, cats, summer grass and spring trees. I threw all my breast milk out and stopped eating everything. That cleared up. However, her speech was delayed around that time. She had about two or three words and stuck there. I asked our pediatrician to test her for Autism. However, they don’t test until eighteen months. So, I called in our state’s Early Childhood Intervention team (every state has one). Once a week, a therapist would come in and work with her. As soon as she hit the eighteen month mark, we took her in for an evaluation and she was diagnosed with Autism. Autism typically impacts boys more than girls. However, when it comes in girls, it could be more severe. That has so far been the case.
Q. In terms of progress, where are they now?
Our son is doing so well that he will no longer need traditional ABA by the end of the year. He has mastered all the goals. He is in traditional school and doing well. He is getting along with his peers and socially, he is at the age he needs to be. He goes to a social skills group a couple of days a week at a clinical center. He is one of those kids you call an early intervention success story. When the chief therapist told us she thought we could discharge him, she said she never discharged a child before. We both teared up. We will always have to be vigilant. The preteen years and adolescence is another hard time. It’s hard for a neurotypical kid; but, its particularly hard for a child who has difficulty with social skills.
Our daughter is three and a half now and non-verbal. She has been in ABA therapy since twenty months old. We saw progress. Then, we moved to Texas and had to wait three months for services and she regressed. She is still in the trenches. However, she has an amazing special education teacher that is dedicated and she is beginning to learn sign language.
Being able to communicate with your child is something people take for granted. Every time my son talks I think, “Thank you, God.”
Q. Is your daughter in the same type of rigorous therapy that your son was in? How do you know which treatment style is best for your child?
She is in a clinical setting. There are two types of therapy. It depends on your child. Some parents go in home first to focus on life skills such as putting on shoes and clothing. A clinical setting is like a day care setting. Your child is around other children. My daughter is at a center with other kids with special needs. There is a team of Board Certified Behavior Analysts (BCBA) that overlook the treatment schedule for 5 days a week. My daughter spends the first part of the day in an early childhood school which is a pre-K for kids with special needs and then moves to her center.
Q. Parenting is tough in general. However, dealing with this diagnosis twice must have been difficult. What emotional obstacles did you face?
I’ve learned to be a lot more mindful of the blessings in the moment. We don’t have the same lives as other people. We pray. It’s hard. We get down and we get scared. We are human, but you have to just keep moving. If you work more on the front end, you won’t have to work as much on the tail end.
“Being able to communicate with your child is something people take for granted. Every time my son talks I think, ‘Thank you, God.'”
Q. How important is a strong support system?
People say the divorce rate among parents of special needs children is higher. That’s debated. We have great support. Our church has a respite night every other month that cares for kids with special needs and their siblings to give parents 3-4 hours for a date night. Our city in Texas also has a respite night. You can’t just have any babysitter. You need a babysitter that understands your needs.
I don’t know how else to say it but God has sent us people that have come to support us. I met a woman in Wisconsin who did not have a special needs child but was persistent in getting our children together for regular playdates each week for over a year. One of my son’s first sentences were at her house. After we moved to Texas, one of our therapists in Wisconsin just happened to move here, too. She offered to babysit anytime we needed.
Q. Any tips on finding resources?
Look up where nearest chapters of local support groups with the Autism Society of America. Autism Speaks has an amazing resource guide broken down by age group, early intervention, etc. Call up your local ABA therapy center or find a pediatrician who specializes in autism and talk through your concerns. Find a pediatrician that understands the journey. Remember: persistence, persistence, persistence. Not all states are created equal when it comes to autism treatment.
I’ve also met some people whose health care coverage doesn’t cover autism therapy at all and they have had to buy health insurance on the Affordable Care Exchange (which is something we have done) or supplement it in some ways. If you have the means, make sure to get ABA therapy included in some way. Research, research, research. Even if you aren’t naturally a good researcher, consult the Google. If you work on this early, there will be some strides made.
“This is not your fault. There is nothing you did in pregnancy to your baby, when you nursed, or didn’t nurse. This is not your fault, but you now have the responsibility to make sure you child is the best version of themselves. That is your assignment.”
Q. What advice would you give to a parent just staring this journey?
This is not your fault. This is not your fault. There is nothing you did in pregnancy to your baby, when you nursed or didn’t nurse. This is not your fault, but you now have the responsibility to make sure you child is the best version of themselves. That is your assignment.
Below is a TED Talk from Temple Grandin. Temple was diagnosed with autism in her 40s and is a professor and world renowned spokesperson on autism.
About The Author
Faye McCray is an attorney by day and writer all the time. Her work has been featured on My Brown Baby, AfroPunk, AfroNews, For Harriet, Madame Noire, Black Girl Nerds, Black and Married with Kids, and other popular publications. Faye also has a number of short stories and a full length novel available for purchase on Amazon. Most importantly, Faye is a proud wife and mother to three beautiful and talented young boys who she is fiercely passionate about raising. You can find Faye on Twitter @fayewrites and on the web at fayemccray.com.