In this episode of The Family Couch, we talk with Maria Davis-Pierre about autism in black children and families.
Davis-Pierre begins by talking about her private practice, Autism in Black, Inc, where she focuses on parents who have a child on the spectrum. Davis-Pierre opened this practice because she has a child on the spectrum and found that the professionals who came in to work with her daughter did not take her family’s culture into consideration. Davis-Pierre provides that children from black families are being diagnosed at a later rate than their white counterparts with a one to two year gap. When professionals see black children, autism is not on the forefront of their mind. Instead, they are thinking of behavioral issues or that the child needs more time, which hinders early intervention. Davis-Pierre wants parents to be educated on the signs of autism and what to do when your child is diagnosed. Many of the red flags of autism mimic behavioral issues, and there is a small number of doctors able to make an official diagnosis. After waiting for an appointment, driving an hour and a half away and doing various testing to rule out other things, Davis-Pierre’s doctor told her that her daughter had the signs of autism but that they wanted to wait until she was three to make an official diagnosis.
We talk about what it looks like to have a diagnosis on the spectrum. Davis-Pierre discusses what this looked like for her family. She noticed regression in her daughter’s speech and sensory issues. After going to the pediatrician to get a referral, she was told she should give it more time. She advocated for her daughter and told the doctor she still wanted to get the test done. After meeting with a multidisciplinary team of professionals for assessment, she was told that they could not give her the diagnosis and that she needed to see a neurologist. Davis-Pierre tells parents they can easily Google the M-CHAT form and take it to get a score which indicates if your child is high-risk, medium-risk or low-risk.
We next discuss how within the African-American culture, people may think that this is another culture’s issue and doesn’t happen to them. Davis-Pierre tells everyone that autism is not race or gender specific. She feels that a lot of shame comes with this diagnosis for a lot of people, so many people would rather not address it instead of getting their child into services that will help them. Many people do not know what autism is, and Davis-Pierre feels that there is a gap getting this information to the community.
Davis-Pierre talks about what a family should do if they feel for whatever reason their child is on the spectrum. She says to advocate for your child. Your doctor may say no, but you can tell him that you still want the referral. You can Google where to take your child to be tested. Many times the school will notice the patterns, and Davis-Pierre tells parents not to get defensive about this. She recognizes that finances may be an issue and provides that it is very expensive, but there are grants and scholarships available. The local program in Florida where Davis-Pierre is located covers one to two therapies, like a developmental specialist and speech therapy. Her daughter goes to a school that is designed to work with students who have autism. You have to do your research and advocate for yourself and your child. Davis-Pierre provides a few websites available for resources, including autismspeaks.org, autisticadvocacy.org, the National Autism Society, and the National African American Autism Community Network.
We change gears and talk about what to do if you feel like or notice that you are the only family in your community as an African American. Davis-Pierre provides that it is isolating. She is one of the few black mothers at her daughter’s school and she sees that other families deal with things differently from how she does or how the African American culture does. Davis-Pierre found her support on Facebook. There are many support groups available for black parents with a child on the spectrum. She has joined many of the groups and recommends searching “black autism parent” in the search bar. Davis-Pierre reminds that family members will not always understand, either. They may say that your child doesn’t look autistic, or that you need to pray about it, or that she just needs a spanking. This only adds stress to you as a parent, so you need to learn to set boundaries with them. Then you can find a group of people that will support you–you do not need to be in this alone. Being a strong, black mom is a cultural ideal that needs to be reframed because you cannot do this all alone. You have to make sure to take care of yourself so you are at your best. You can get parent skills training and have your own therapy. Reaching out and getting support is very important.
We talk about educating family members and setting boundaries. Davis-Pierre has noticed that setting boundaries is difficult because the community is so close-knit. She recommends educating your family first about what it means for your child to be autistic. You have to let them know how you handle things like behavioral issues differently. Sometimes you have to cut communication with a family member that is not respecting boundaries or your child. You have to let the family member know what the boundary is and why you do not like what they are doing that is crossing the boundary. If the family member chooses not to listen, then you have to cut the communication. It is very difficult but necessary. You can work with your therapist on how to set boundaries and what the boundaries will be for you as an individual. Davis-Pierre knows what her child can handle in terms of family events and gatherings. They may get too loud sometimes, but her daughter puts on headphones for the noise. Her family makes accomodations for her daughter, but if there is still sensory overload, she just removes her from the situation. Setting changes can cause a lot of issues for a child with autism. If you give them an idea in advance of where they are going, it is helpful.
We finally discuss the idea of communicating with your child to determine what their wants and needs are. This is a huge mind shift in the African American community. Knowing that her daughter is on the spectrum makes Davis-Pierre listen harder, as communication is different. You have to be more patient. She advocates for her daughter because she cannot do it for herself. When she can self-advocate, Davis-Pierre will listen to her and what she wants because Davis-Pierre cannot speak for her in all situations. She feels that in the African-American community, parents need to listen to what the needs and wants of their children are. They will not always align with your needs and wants as a parent and you have to make the difficult decision when you feel that something else is best for your child. Davis-Pierre wants a change in the community to know that autism is not bad and mental health disorders are not bad. There is no shame in having an autistic child and there is no cure for autism. If you are constantly searching for a cure or trying to change who they are, your child may think there is something wrong with them. The actions of what you are doing can be impactful for your child.
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GUEST BIO:
Maria Davis-Pierre is a Licensed Mental Health Counselor in Florida who owns two private practices. She has extensive experience working with children on the spectrum and their families. Maria’s passion is being an autism advocate with her mission being to bring awareness to the impact culture can have regarding an ASD diagnosis.
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CONNECT WITH MARIA DAVIS-PIERRE:
WEBSITE: https://autisminblack.org/
CHECKLIST: https://autisminblack.org/checklist
FACEBOOK: https://www.facebook.com/autisminblk
INSTAGRAM: https://www.instagram.com/autisminblack/
TWITTER: https://twitter.com/autisminblack
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Show transcripts by Amy Lockrin | Online Business Manager & Systems Strategist | www.amylockrin.com
