By Keishya Fiore, Educational Advocate
In my previous blog on Autism Acceptance, I emphasized that Autism Spectrum Disorder (ASD) is a spectrum that expresses itself differently in each person.
I also wanted to ensure that the voices of people with autism were being heard, so I thank my interviewees Alexis, Ben, and Jordan for helping me with this, as well as all others who have unknowingly influenced me.
Unfortunately, some people with autism do face many struggles. The world isn’t as accepting and accommodating as we would wish, and people aren’t always the most understanding or knowledgeable. Therefore, I would like to shift my focus to resources, advocacy, and the importance of positive thinking and community.
I had the pleasure of interviewing the Resource Coordinator from Pathfinders for Autism, Nikki Stokes. She is also a parent of a child with autism. In our conversation, she and other parents stressed the importance of community. Pathfinders is a great resource hub that goes beyond providing information, hosting seminars, and educating the populace. What struck me, as a parent myself, is that they host events.
Here is a little unsponsored advertisement. From my experience, I can attest to how accommodating and understanding the staff at the National Aquarium in Baltimore are for children with disabilities. There is a reason for this. Places like the National Aquarium, The Maryland Science Center, MiLB teams like the Aberdeen IronBirds, The B&O Railroad Museum, Ladew Gardens, and R.I.S.E Arts Center, etc., work with Pathfinders for Autism to sponsor events for families. Some, like the “sensory friendly” summer camps, are for children, but others are for families with autistic members. It’s an opportunity for parents to be with other parents who “get it”- who won’t judge or escalate a situation but find comradery and support.
Pathfinder’s even hosts groups for adults to connect – whether they are on the spectrum or are related to someone who is. To quote Ms. Stokes on why she loves her job, “[I get to make] a difference. As a parent, I know how isolating it can be to be able to provide things and let families thrive. There’s no judgment; everyone is welcoming at these events, and seeing parents encourage each other makes it all worth it; it’s not work.”
Having a community to support both yourself and your child is important. Previously, I stated that girls are underrepresented when it comes to diagnosing ASD. This is because the majority of studies on ASD were done on males, but also because females, in general, mask, so it can be harder to identify.
Another underrepresented group is people of color (POC), partly because of community. One of my autistic interviewees said that they were not diagnosed until later in life because when the topic that they may be “different” came up, they were met with denial. Underrepresentation is partially due to stigma within POC communities about mental health. One parent, Tawanna Davis, explains, “There’s the issue of ‘not my child,’ and this is not just in the African American community. Parents need to accept that something is happening and [decide]; will you embrace it or fight it? This can split a household apart.” Community plays a large role not just in continuing mental health and finding resources but also in getting a diagnosis.
Ms. Stokes also points out that the healthcare system is another factor in underrepresentation. Marginalized communities often do not have healthcare. “You need good healthcare; you have to navigate that system, and working with doctors is hard.” I have clients myself who have been on the list for autism screening for almost a year – this is typical. That is a year when their child is not receiving services, necessary healthcare, an appropriate education, etc., because they are waiting for a diagnosis.
A significant hurdle for families with autistic children is services in general. Ms. Stokes mentions how finding consistent and appropriate providers can be challenging. “Some people want to provide services but are afraid to because they don’t have the skills.” Sharon, the Community Supports Provider from my previous blog, explains, “I have a client who needs behavior support, but it’s hard to find. Some neurotypical people who work with him don’t really understand it and just use typical consequences (in response to atypical behavior). They don’t get that they need to give actual support.”
Nikki Stokes identifies another issue, “things like ‘wait-time’ need more structure, or not explaining where the person is going. These things can make everyday events like going to the doctor or getting a haircut stressful. There is also a high turnover rate for support brokers and therapists in fields where you need consistency.” The school system is a great example of this as they are facing shortages in teachers, paraeducators, aides, and support people. Many of my clients need one-to-one support with adult attention, but the schools don’t have the personnel.
What’s more, the aides they do have are not always trained to work with students with disabilities and are not equipped to meet their unique needs. Not just autistic people, but humans in general (especially children) excel when there is structure and familiarity when they are understood. However, when that is not provided, the world needs to know how to accommodate those most impacted by life’s curve balls. Pathfinders and other organizations are great resources to help you navigate what is out there and what places will have people ready to make those accommodations.
Having an advocate is another option. As I previously mentioned, schools, which should be a safe space for children filled with familiarity, structure, consistency, and support, do not always deliver. This can be especially damaging for children with autism and a particularly stressful time for their parents. Tawanna Davis explains, “Even with my education and background (working at the Developmental Disabilities Administration) it’s stressful, and it’s usually not the child, but the adults, the staff, and the school system – the small percentage that don’t do their jobs, that don’t understand the stress they put on the parent and the child.”
That particular stress is something I see every day as an advocate at The Option Group. We receive a variety of calls, some in tears, some in outrage, some just not knowing what to do, from parents who may or may not know that something is wrong, but they do know that their child is not getting the education they deserve.
Mrs. Davis shares a personal experience she had when her son was transitioning from fifth-grade elementary into middle school. “The fifth-grade team recommended that the middle school team meet before the first day of school, and I went to the school in July to talk to the IEP chair, but she ignored us and would not call that meeting until after school started. As a result, my son stepped into that building, and everything fell apart. No supports were in place; he was bullied over and over again. He had to be pulled out and be diagnosed with anxiety, depression, and post-traumatic stress disorder all because this one person ignored the recommendation of his previous IEP Team.” She continued, “When the system worked, it worked, but when the adults in the system don’t do their part, they need to understand that it has a negative impact on the parent and the child- sleepless nights, stress, having to leave work early, and the mental toll of a child being anxious, stressed, and scared to go to school.”
I want to reiterate that this is not a unique situation. I have seen many students, even older adolescents, who cry at the prospect of going to school each day but smile when they enter the building because they know it is expected of them. Smiling does not always equal happiness; it is a form of masking, one children learn to do early. The stress it puts on families is real. Being called to constantly pick up a child because the school can’t or won’t support them – whether because someone isn’t doing their job, or the child is in the wrong placement – can have devastating impacts. A quarter of my clients have lost jobs this way. Not because they are incompetent, not because they don’t plan or aren’t hard-working professionals, and not because there is something bad or wrong with their child – but because they are told they need to pick up their child from school early because the school “can’t handle them.” The bosses of those dedicated parents can’t have people constantly missing their shifts or leaving early. It is heartbreaking. As Mrs. Davis says, “We don’t work, we don’t get paid – the whole family is impacted by just one person not doing their job.”
Having a child with special needs should not be a curse. It should not destroy families. These children should be celebrated for their unique qualities just as neurotypical children are celebrated. However, poor personnel can turn that celebration into a disaster, which is unfair.
“This is where advocacy comes in,” says Mrs. Davis. “That’s why advocacy is so important. Without Mary Jo (her advocate and the Director of Educational Advocacy at The Option Group), I would have ended up in therapy with my son, and it wasn’t until Mary Jo was involved that we began to see improvement and resolution. I cannot begin to emphasize the importance of an advocate in my son’s life. I’m a professional, but at the IEP meeting, I’m a parent; I’m emotional. Many parents think they don’t need an advocate, but advocates know things we don’t about the laws and school systems.”
Support and understanding are essential. Having a child with autism can be a struggle, especially when they are younger, but it can also lend its way to a new understanding and appreciation of things. It can teach you to expand your mind and think differently. It can bring families together through shared experiences and understanding. It pushes you to question your own behavior and social norms and can connect you to wonderful people with a deep love and understanding for humanity. To quote one of the parents I work with, “Being a parent of an autistic child has taught me many things – patience, perseverance, focus, and humility. Autism robbed me of vanity and pride a long time ago.”
Our differences make us who we are, but because everyone is different, we are lifted up in ways we wouldn’t have thought of before; we are challenged in ways that make us stronger, and we grow wiser in ways we could not on our own.
If you or someone you care about needs additional support to help cope, The Option Group is here to help. Don’t hesitate to contact our professional care management team for assistance.
About The Option Group: Founded in 2010, The Option Group’s compassionate team of experienced Certified Life Care Managers and Educational Advocates provides services for families, their loved ones, medical professionals, and professional family advisors in Maryland, Northern Virginia, Southern Pennsylvania, and Delaware. The firm understands the challenges of caring for individuals who need assistance throughout their lifespan due to aging, dementia, disability, or serious illness. Our skilled providers possess over 100 years of combined experience navigating the healthcare maze and accessing hundreds of resources. The Option Group helps families spend quality time with their loved ones, providing clear choices that lead to better care. For more information, visit www.theoptiongroup.net or call 410-667-0266 (MD) or 717-287-9900 / 610-885-8899/ 215-896-6756 (PA) or 302-858-6449 (DE). For Minor & Young Adult Life Care Management or Educational Services, call Mary Jo Siebert at 410-967-0122 or 443-318-4244.