Jackie Pilgrim Talks About Blackness and Autism
Jackie Pilgrim Talks About Blackness and Autism
NBDC Interview Series "Black, Gifted & Disabled"
By Jane Dunhamn
What is Autism?
Autism is a neurological disorder that affects communication, social interactions and contributes to obsessive interests and repetitive behaviors. The symptoms typically present themselves in early childhood. There are no known cures, however therapies do help. Autism is an intellectual disability not mental illness as some may think.
How old was your son when you first suspected he had autism?
Hunter was 27 months when I noticed changes in his behavior and language skills. His language was already delayed due to severe complications of premature birth. So Hunter did have language, though delayed, it was still developing. That’s why I found it odd that his vocabulary stopped growing. In fact it was decreasing rapidly. In a few weeks my son had gone from uttering a few words and short sentences to grunting and mimicking animal sounds that his grandfather taught him.
Hunter and I used to play games together like “peep-eye” and hide-n-seek. Those games stopped when he lost the ability to respond to me. When I called his name it was if he didn’t hear me.
He wouldn’t respond, not even to look in my direction to acknowledge that I was speaking to him. It was as if he lost all awareness of his surroundings; accept that which was part of his immediate interest, like stacking blocks.
If I placed another toy next to him while he was stacking blocks he would not respond. Hunter needed physical cues in order to respond to anything or anyone. I used cues like clapping, placing my hand on his shoulder while speaking to him or taking his face into my hands and gently turning him towards me or towards something that I wanted him to look at and even still, he avoided looking at my face or any object that I wanted him focus on.
Hunter loves lollipops. At the store I’d show him that I was purchasing a lollypop. I’d put it in a bag and hoped that he would look for it when we got home. He didn’t. It became increasingly obvious that my son would not look for the candy, not because he didn’t care, but because he couldn’t. Something changed.
Around that time stimming behaviors started. At first, I thought he repeated sections of movies because he liked them. Later on, I realized the intensity with which he engaged in this behavior and saw that it was more than what I anticipated.
What is stimming?
Stimming is a repetitive motion or behavior. It could be clapping, slapping of the chest area, rocking, tossing objects, mouthing objects, wringing hands together, unintelligible utterances over and over or repeating a word over and over, listening to music or parts of sounds repeatedly. There’s also flapping which is like jumping or bouncing in place while flapping hands like a baby bird taking flight. There’s flitting which is more of a skip/trot/run while flapping hands and sometimes making happy sounds or grunts. Stimming can sometimes be hurtful. Some autistic children bang their heads against the wall or other surfaces like doors, beds, cabinets, furniture, maybe even someone standing nearby. There is also slapping their head with their hands or some other object like a toy or eating utensil. Stimming is usually a means for showing frustration or happiness and excitement. It can also be a way to relax. In my personal experience I have heard and witnessed many misconceptions about stimming and other sensory needs.
What are some of the misconceptions?
One of the misconceptions is stimming behaviors need to be stopped. The behaviors themselves don’t necessarily need to be stopped unless they are hurtful. Try to figure out what the stimming behavior means to the individual who’s having the behavior. It’s not one stop shopping. Whatever stimming means to one may very well mean something entirely different to another. Autism is a “spectrum” disorder. Autistics are just as diverse as anyone else.
Another common trait is walking on tippy toes. One time I attended a talk about Autism. The professional giving the talk mentioned autistic children walking on their toes. She said walking on their toes was a sensory issue and they did it because it felt good. That statement is inaccurate. There are many children who walk on their toes, usually stopping around the age of three. Perhaps in those cases toe walking provides pleasant stimulation, I don’t know. Children that continue walking on their toes past the age of five may be experiencing neurological immaturity. There are several treatments for toe walking some of which are non-invasive. It’s my understanding having a dysfunctional vestibular system is a common cause for autistic children walking on their toes. The vestibular system provides information to the brain about the body’s motion and position. In this instance, toe walking may be reduced by providing therapeutic vestibular stimulation by way of swinging. I’ve seen the use of glider and hammock style swings. Prism glasses used in a vision training program is another non-invasive therapy which is used to treat visual vestibular. I used physical therapy for my son. We did exercises to stretch his tendon. This method of treatment worked well for him.
How did you learn about Autism?
I initially learned about autism when looking up causes for my son’s newly developed symptoms. Later I learned much more by reading books, articles, becoming more aware of my own traits and speaking to other individuals who are on the spectrum. Prior to all of that, the only time I’d ever heard the word autism was in relation to the movie Rain Man. Oh and there was that time when I was a young adult. I overheard two adults in my community talking about autism. This was shortly after the airing of Rain Man. One was concerned about Black people “getting” autism. The other person said no need to worry because autism was a “white person’s disease.”
When did you begin seeking a diagnosis for your son?
Immediately, I made an appointment with Hunter’s pediatrician, who when asked turned to “look” at my son and proceeded to claim that he did not “see” autism. The pediatrician made no attempt to give a formal assessment or ask any questions. I asked the pediatrician how much he knew about autism and he stated that he did not know much about the condition. Needless to say, the next day I sought to get an assessment through an organization specializing in early childhood development.
One of the things I found most daunting about the whole ordeal was the application process. It’s definitely not for the faint of heart. The parent has to fill out an over-exaggerated amount of paperwork including a questionnaire filled with redundancy and then they had to wait at least 3 months before receiving an appointment, if they were considered eligible to receive an appointment.
What did you do in the meantime?
We continued receiving early intervention therapies. I researched autism and treatments and came across ABA (Applied Behavioral Analysis). There wasn’t a lot of information available because ABA was a coveted resource, known of mostly by therapists and those who could afford it. At that time, only upper middle class families could afford the training seminars, therapies, and ABA based school programs. Those things were out of reach for families like mine. Not once was the subject of ABA brought up by any of my son’s therapists and when I inquired, they were surprised I had heard of it.
Three months pass and we receive notice of an appointment. Several people were involved. There were two therapists working with my son and 3 others who were taking notes. The diagnosis rendered, Global Developmental Delays. Supposedly it was too early to tell. Throughout the entire experience I was the only one to say the word autism. All others were careful not to mention the “A” word.
Meanwhile I am continuing to work with Hunter utilizing some of the attributes of ABA therapy. I am not a fan of ABA therapy as it is an intensive training often 25-40 hour per week for 1 to 3 years. I could not justify putting a child through that level of intense training. However, I did see some components of the therapy that were beneficial. Components like repetition and the therapy being reward based. A cue would be given to the child for a response and a reward would be given for the correct response. I incorporated those things into our day to day. Over time I started seeing progress. I made up games to encourage my son to look at my face and to teach him how to read my emotions based on my facial expressions. I also turned finding the lollipop into a game which has encouraged him to become quite inquisitive. There’s nothing he won’t search for if he wants it bad enough.
I learned about another local agency that specialized in Autism and went through a similar process to get an appointment. During that assessment one of the therapists mentioned that she saw some possible traits, that is, until my son turned and blow a kiss to me. Immediately the therapist said my son could not possibly be autistic because. An autistic child could never turn and blow a kiss to someone. So that’s it. After filling out multiple applications at least a quarter to half an inch thick, months of waiting for appointments, researching treatments and working diligently with my son; after all of that I am told my son can’t be autistic because he blew a kiss to me. By this point, I’d just about had enough. I was exhausted and running out of avenues. Once again I went through the checklist of traits my son already had. Once again explained what I’d been doing to help him with those traits. The therapist then leaned over to me and whispered, “Working with your son so diligently might have shot you in the foot.” That is when I realized this person, this entity believes my son’s destiny is in their hands and so refuses to help him get what he needs. That therapist and the therapists that stood behind her knew my son had autistic traits and still denied him the diagnosis.
I worked with my son every day, holding onto hope that help would soon come and help did not come. Each day that passed was another day my son was not receiving the early intervention that we were told our children need. Why? At the time I could not fathom why, but hindsight is 20/20. Hunter not receiving a diagnosis of autism wasn’t for lack of education or resources. It wasn’t for lack of requesting help early enough. He did not receive an autism diagnosis in time to benefit from early intervention treatment because the IDD professionals and Autism specialists chose not to give him an autism diagnosis. Had I not fought for the next five years he’d still not have an autism diagnosis today.
A few years ago I took my son back to the autism organization where it was decided he could not possibly be autistic. Funny, immediately one of the therapists walked up to my son; spoke to him and ask if I wanted to enroll him in their program. I thought to myself, how ironic that in this place where my son was denied every opportunity for help, we would find someone so eager to help him now. By this time he was 13. How I wish they were so eager to help him back when…
It sickens me every time I read an article about Black children getting diagnosed later than white children. Some articles make it seem like it’s the parents fault for not recognizing developmental differences sooner and seeking help or it’s because of the lack of resources in black communities and schools. I’ve never seen an article written about a Black family’s attempt to follow the proper channels to get an autism diagnosis when they first recognized the symptoms and getting the door slammed in their face, not until recently when I saw a video of a Black mother who when inquired about her son possibly having autism was told,” No, it may be an emotional disturbance, but it’s not autism.” The mother in the video, Dorothy Groomer, also said, “We did not fit the classic mold for autism, which is white, upper middle class and very, very bright.” Therefore her son was labeled emotionally disturbed. She later jokingly stated that because she wasn’t white she couldn’t even be a “refrigerator mother.” Whites only: Racism and Autism. REFRIGERATOR MOTHERS
What is a “refrigerator mother?”
Leo Kanner, a Johns Hopkins University Psychiatrist, identified autism as a distinct neurological condition in 1943. It was named Early Infantile Autism because it usually appeared within the first 3 years of life. He observed a few children from educated families. In doing so, he made the assumption that, “autistic children were more likely to be born to highly intellectual parents who were white and upper middle class.” Kanner coined the term “refrigerator mother” to describe mothering of autistic children as if a refrigerator that did not defrost. Lack of warmth from parents, particularly mothers was identified as the blame for their child’s behavior.
What are your views on ABA? More specifically, do you think there is a way that ABA can exist without ableism, perhaps focusing solely on creating client independence?
As I stated previously, I am not a fan of ABA therapies as they are utilized. ABA therapies are much like training an animal. You know…a sit, roll over, and fetch kind of thing. Only it’s touch your nose, have a gummy bear, pick the right answer, have another gummy bear, and so on.
ABA Training was created to erase/eradicate autism traits. It’s not designed to create independent thinkers. It’s designed to make parents feel better about their child’s behaviors by training them to behavior in a way that is more socially acceptable, “normal.” Therapies like this are born out of shame, blame and lack of acceptance.
I appreciate ABA therapy’s use of repetition. I also like the idea of giving positive reinforcements, but not in the way ABA therapy was designed. Repetitions yes, but also include open avenues that allow the child to be able to make their own decisions, explore their own rationales. I used a very basic principle, the 3 Es, which are expectation, explanation, and exploration. This basic principle is utilized for teaching all. There’s no reason why it can’t be adapted for all learning types. Be clear about your expectations, give explanations (make explanations adaptable according to the child’s ability to understand) and give them plenty of room and time for exploration. Allow the child to explore the answers and conceive their own answers according to how they process their discoveries. As teachers and therapists we are to assist with directions and guidance. The initial goal should be to develop a desire to learning and this can be done by creating teaching structures that incorporate the child’s interests.
Having positive reinforcements is good, but not when given out like dog treats. I give hugs and high fives from time to time. I also allow breaks and points for engaging in favorite activities. These things work well and they don’t come with every success. They have to be earned over a period of time. Meanwhile, in between the fun reinforcements you can always say, “Good work. Keep it up. Don’t give up.” Which later became, “How do you feel about that? Did you do okay? Is this a good thing?” This dialog allowed my son to reward himself, by his own acknowledgment.
I started off by giving him tasks that he could not fail; asking questions that only had one answer so he could feel good about the process. Later, I set up tasks where he could not achieve the desired goal. This taught him that getting answers wrong was okay. He also learned the value of trying again until he got it right which was the greatest reward, the feeling of accomplishment after working hard for it. Afterwards, tasks were set up with more and more choices. Sometimes he’d add a choice that wasn’t included because the choices that were there did not reflect his answer.
Final addition is inclusion. I include my son in daily activities both in and out of the home along with his individual activities. The more he is included, the more he observes on his own even to the point of mimicking some of my behaviors which is a very “typical” part of development that may not otherwise occur if not fostered.
How old was your son when he received an autism diagnosis?
He was 9 years old. It had been 5 years since we were told my son could not possibly be autistic. I searched until I found a psychologist who specialized in working with autistic children. She did a thorough assessment which included reviewing all previous assessments and speaking with Hunter’s pediatrician. After doing so, she came to the conclusion that Hunter did indeed have an autism spectrum disorder. She diagnosed him with PDD-NOS, Pervasive Developmental Disorder Non-Specific. The diagnosis PDD-NOS is given to children and adults who are on the autism spectrum, but do not fully meet the criteria for other autism spectrum disorders such as Autistic Disorder (classic autism) or Asperger’s Syndrome.
Keep in mind, the fight for getting what your child needs doesn’t end once they’ve been given an autism diagnosis. This is just the beginning of a whole new fight. Now it’s the time to get prepared for dealing with schools, school district policies and therapists.
IEP (Individualized Education Program) meetings can be extremely intimidating at times. There are advocates available to help. They will attend IEP meetings with you to represent you and your child. They know all of the laws and policies and will make sure your child’s rights are not infringed upon. Advocates usually charge a fee. If you’re not able to pay the fees, you can check local resources to see if there are advocacy agencies that offer free or sliding scale IEP advocate services.
Other issues to look out for, there may be times when you may encounter a case manager, QP (Qualified Professional) or therapists that do not have your child’s best interest at heart. Know your rights. If you have such a person on your child’s care team you have the right to request they be removed from the team. The organization that provides your services is obligated to find a replacement professional for you. You do ever have to work with anyone you don’t believe is looking out for you and your child.
When my son was 4 years old, we had a case manager that was incredibly difficult to get along with. She was suspicious of everything I said and often changing the meaning of my words to suit her ideal of what I was saying. She was extremely argumentative. During a phone conversation I mentioned that I was looking forward to my son receiving CAP (Community Alternative Program) for children. This is a Medicaid waiver program which focuses more on the needs of the individual as opposed to the family’s income. The caseworker immediately started screaming at me. She said, “You need to stop asking me about CAP! Your son will never get CAP!”, before I knew it I screamed back at her, “Madame, your services are no longer needed!” At which point she became very quiet and in a calm voice ended the phone conversation. Had I not been aware of my rights, things might not have gone so well.
Have the national autism organizations addressed the issues of inequities experienced by Black families?
No. There are resources that Black families can look into and parent support groups, but those resources do not address the disparities and inequality that we face within the disabilities community.
What Suggestions do you have for Black families who are seeking diagnosis and/or services for their child with autism?
My advice to Black families is to do the research on autism in general, but don’t try to read everything you see. There’s so much information out there. It would be overwhelming to sift through it all.
There’s very little autism resources specific to Black families. The Color of Autism is one organization that I know of founded by an African American mother who quickly realized the lack of available resources specific to our needs. You can contact her via email through the website and there’s also a phone number listed. Here’s an article from Essence Magazine that shares more information about the organization and its founder. Breaking Down The Color of Autism: Why Black Families Need Access to Resources Now
Make arrangements to get an assessment as soon as possible. Start with your child’s pediatrician and go from there. If your pediatrician cannot or will not give an assessment, contact your area ARC or Autism Society to find out if there are organizations near you offering free autism assessments.
Also, seek other Black autism families locally and through online parent groups.
Don’t be shy. Ask questions…you can never ask too many questions.
What are some things Black families should look out for when interacting with disability organizations and should families ask for contacts of other Black families in the organization?
This question is difficult to answer because I have to look at it from several angles. The search for disability organizations addressing needs specific to Black families is like looking for an invisible needle in a big white haystack.
This is what I do… When it comes to looking into a disability organization, how that organization responds to the needs of disabled people comes first. What I initially look for in a disability organization is the presence of disabled people. I like knowing if disabled people are part of the staff and the board, not just a point of interest. The next thing I look at is advocacy and information. I look for organizations that actively advocate for the needs of disabled people on both the legislative level as well as within the community. Disabilities information should come from a wide range of resources, not just research. When those things have been checked off the list I turn my attention to diversity in available resources and accessibility of those resources to BME (Black, Minority, Ethnic) communities. Unfortunately Black families will not find resource specific to their needs in many disability organizations. It is next to impossible especially when looking at large private and/or state run disability organizations. At best I have found a small window for “diversity.” The window may be an inactive or somewhat slightly active committee or individual that looks into increasing diversity (global statement) within the organization and its resources.
There are a few grassroots efforts out there, but they are hard to find, understaffed and often not well funded.
Black disabled individuals and families cannot depend on a white washed system to understand or provide for our needs.
We are gaining momentum in making the problems known, but we also need to focus on becoming part of the solution. There are many things we can do to help. We can get together with like-minded members of our community to give and receive parent, family and individual supports. We can offer volunteer services to grassroots organization focusing on providing resources and addressing disabilities disparities in black communities. There’s a lot you can learn through these organizations and through the experience of volunteering. You can help to get more information into our communities through meetings, conferences, playgroups, social groups, written materials and websites. Grass root organizations can get together to share resources and strengthen our presence. We can utilize our talents to set up systems and advocate for community and legislative supports. And of course, monetary or service donations can be made. We are the key to making the difference.
One last thing, be willing to ask questions, seek help and utilize the help that is available. I say this because; in my personal experience I have received many calls from friends who know someone who has a child on the spectrum. Often times this person is looking for resources or would just like to ask a few questions. I always agree to be contacted, but I have yet to receive a call.
What is your take on research focusing on the differences in how autism presents in Black children and white children?
My take on the subject is this… And this is solely my opinion. Research that is based on the differences of how autism presents in ethnic and non-ethnic children is clearly derived from a lack of understand of the importance of child rearing in ethnic families. I can speak on the importance of child rearing in Black families specifically. Though I may not always agree with the methodology, one thing that remains consistent in Black families is child rearing come first. This is something that applies to all children regardless of having a diagnosis or not. Black families categorize behaviors differently than non-black families. For many Black families, use of therapies would not typically be considered for behaviors such as sitting down to eat a meal at home or in a restaurant, wandering away from family members, playing with siblings or keeping their hands away from a hot stove. These things fall under the category of childrearing. Help might be considered if the family’s child rearing practices cannot correct the behaviors.
This theory first came to mind several years ago during a visit from my son’s QP (Qualified Professional, supervisor to community worker), a Black male. While talking the QP noticed that my son remained fully dressed. He thought that was odd. His stated that most of his male clients who were on the spectrum randomly undressed for no apparent reason. Rarely did he experience a client that kept all of their clothes on during an entire visit. It was a common behavioral issue. He asked how I was able to get my son to keep his clothes on. My answer, “Simple…I raised him to do so.” I had a standard. Clothes are to remain on until it’s time to change into another outfit, getting ready for bed or taking a bath. That is how I raised my son. As a toddler, he was allowed to roam around our home in a t-shirt and pull-up. When we had company he had to put on a pair of shorts in addition to what he already had on. Hunter, like many other ASD children randomly undressed also. When he did, I’d get his clothes and help him get dressed again. Hunter learned through repetition that the expectation was to remain dressed whether it is us at home, having guests or going out.
Seeing this new direction in Black/Ethnic human subject research makes me nervous. I don’t want to see Black ASD children and adults treated like lab rats, being poked and prodded as white scientist search for genetic differences.
What are your closing words you would like to share with Black families?
In order to dispel disability stigma, decrease and someday abolish inequality in rights and resources for disabled Black people, we not only have to come together to voice our needs and concerns, we must also be willing to do the work. No one can tell our stories better than we can. No one can understand our plight more than we do. No one is better equipped to meet the need than we are.