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This Week’s Topic

Joining us this week are guests Khylil Robinson who is an autistic self-advocate, and his mother, Michele Abraham-Montgomery, also known as Chele, who specializes in Family Services, Autism Resources & Advocacy, Peer Family Coaching, Peer Best Practices, Modeling Play Therapy Techniques and IEP Reviews and Preparations. Psychologist Dr. Robert Naseef introduced us and in Part 1 this week, I’m very excited to share the work they are doing including Spectrum Success 911, a nonprofit organization, connecting families with community resources and organizations of support, and Khylil’s autism self-advocacy.

Autism self-advocacy

Khylil got started in his advocacy work at the Community College of Philadelphia where they did a program called Get to Know Us where students with disabilities, whether being deaf, blind, mute, autistic, etc. talk and share. Khylil says it brought him out from being timid. This led to the school suggesting he work in the District Attorney’s Office and start talking about the opening of the Philadelphia Autism Project, which was an amazing experience, Khylil shares. He did that from 2014 to 2016 until he got his mother involved and they ended up on a news segment. This television spot landed him the two jobs at the City of Philadelphia and being a part-time blogger for ASCERT, as mentioned in the introduction, Khylil explains. Since then it has given him some purpose and he’s proud of his advocacy work.

Khylil explained how his mother was told that he would never walk or talk and in 3rd grade he noticed he was in a different kind of classroom environment that was called ‘A.S.’ He asked his mother what it was and she told him it was Autism Support. She explained that autism is just like being Clarke Kent who wears glasses but then he becomes an entire new being. He thought that was pretty cool. Khylil loves collecting comic books and playing video games which helped to relieve his stress and stims. He uses his advocacy to say it’s ok to just be yourself and to just take your time being yourself. I commented that Khylil’s mother is awesome and it really sounds like she really never made Khylil feel ashamed of who he is. She empowered him to be who he wants to be and that through the work he does he wants to emulate that to others.

Mom’s Journey

I shared how, as a fellow parent, you never expect to have an autistic child, then the world throws this doom at you as if it’s an awful life sentence. The journey we go on is to discover that these are all terrible myths that are out there. Chele agrees. She didn’t know about the diagnosis when they received it. She only knew that Khylil wasn’t developing typically. But they didn’t hear the word ‘autism’ until he was about 10 years old because he had been diagnosed and misdiagnosed with other labels. She just always had a sense of hopelessness and helplessness, she shares. 

Chele felt like a chicken with her head cut off and didn’t know how to help her child. They just told her that something was wrong. They knew that he wasn’t talking and that he had fluid in his ears and had tubes. But even after the surgical corrective procedure, he still wasn’t talking. Then they received a Language Impairment diagnosis, then a Reactive Attachment Disorder diagnosis, which meant that during his infancy she detached from him which caused him to react. But Chele knew that whatever was wrong was not her fault.

What frustrated Chele, was that they tried to find different things to rationalize Khylil’s state instead of saying, “We don’t know.” They went through these diagnoses and terminologies of why he couldn’t walk or talk and they said he’d never be productive in society and that she should probably institutionalize him. She refused to believe that. She remembers her lowest day when Khylil was crying and she couldn’t pacify him and she was crying. She prayed, “God, if you help me figure this out, I’ll do everything in my power so that another parent doesn’t feel as low or as hopeless as I feel right now. I will make sure that no one else feels this way.” 

That was the day of her purpose, Chele says. She knew that she had made this promise that she would make sure that other parents never felt as hopeless and helpless as she did and the path got brighter and brighter. She had to make a lot of sacrifices, though, which she educates parents about today: that if you have children, you have to make sacrifices. She was in college and she had to make a decision to get her degree and her letters, or drop out and find out more about her child and what’s going on. She dropped out and had to go on public assistance. 

She enrolled in a class to learn State and Federal laws for individuals with special needs, at the time. She had to go to North Philly to a Hispanic organization called HUNE and they accepted her, even though she didn’t speak Spanish. The materials were all written in Spanish and most of the participants were very limited in English, but they all had children with a disability and wanted to learn how to advocate for their children. She was in the first graduating class at HUNE and got a certificate as a Certified Advocate. She started to learn how to teach and empower other parents to advocate for their children. 

Following the red carpet

After that, Chele became a Home and School Association Regional Representative in the Southwest District of Philadelphia. It was amazing. When she had Khylil she was 22, but she looked younger, so people talked at her and not to her. She wanted to have a voice, to be heard, and to be respected. Through learning State and Federal laws and learning how to advocate for herself, she was being heard. It was so powerful and it inspired her to join places where she could have a voice to help others develop their voice to make their choices.

She joined the Family Members’ Committee at Community Behavioral Health–an empowerment group for families, and through that she heard about the position opening at High Fidelity Wraparound and she got it! It was amazing, she exclaims. She had been feeling so bad about having to drop out of college and feeling like she’d always be starting from the bottom in entry-level jobs such as working at McDonald’s. She believes that God opened up these opportunities for her, rolling out the red carpet to help her help other families that she had promised to do. 

Through these jobs, doors opened and she started working with families from state to state. She was helping families advocate for their children in residential health facilities. As she was representing families–not just the children with disabilities, a lot of things started to hit home, she says. It was like she was looking in the mirror, dismissing a lot of things that she was going through with anxiety and depression. She shares that being a person of colour, she was taught that what happens at home stays at home and there were always secrets. 

Chele says that this is like a cancer and that transparency is a healer. There is empowerment through each other. She learned the African word ‘ubuntu‘–I am what I am because of who we all are–meaning that it takes a village. She remembers growing up when she’d go outside and wait on the bus. If someone came up to you, someone in the window would yell, “Who’s that talking to you?” The village was always there, but now the village has changed. When she does parent coaching, she says that we have to bring the village back. 

I can see why Chele has had success in her life. Even though she had doubt, and even self-doubt, she took that step. She stepped onto that red carpet that was laid out for her. It’s such a scary step for so many people to take. And having the support of someone like her is so helpful to so many families. 

Parents have important voices

Chele realized through her work that even though she didn’t get her letters behind her name, M-O-M and D-A-D are the most important letters at the table. When she learned that, she was able to sit at the table with her head held high and realized that those other people at the table might be the expert in some areas, but she is the expert of her child and she is a leader and a team member at this table! I agreed how important this was, especially when voices at the table are made to feel so small. Our society, I hope, seems to be moving towards listening to everybody’s voices. Chele adds that that’s why we say, “Nothing about us without us.“

Spectrum Success 911

I asked Khylil how Spectrum Success 911 came about. He said that in 2017 they received a SEED grant to interact with other families using therapeutic games. They met every Thursday evening doing things like using PlayDoh to interact with your fingers. Sometimes they would play the card game UNO to spark a conversation. It went really well, and even though they had more parents than children on the spectrum, it was extremely interactive. It went well until the Pandemic but they picked it back up in 2021. They started with a small check-in on Zoom then they would go to families’ houses. It felt more at home and connected, even following the safety procedures of Covid, Khylil shares.

Many of the families would have an autism therapeutic support person, Chele continues, and she would teach the families that you don’t have to be a therapist to do something therapeutically. What should be happening, she explains, is that if you have a therapeutic support person in your home, they should be transferring that skill over to you so you can be empowered on your own. They should not become a new family member. They should actually be working themself out of a job. They should transfer the skills over to the adults, but that’s not the way they do it. While they work with the child, Mom uses that time to do things around the house, etc. 

The power of empowerment is learning those skills that you can do yourself without the letters behind your name. Everyday activities can be used in a therapeutic way. The UNO cards, for instance, accompanied with thoughts and feeling cards can start engagement. Sometimes when you come in and ask a parent, “How was your day?” they feel interrogated, Chele says. 

But if you do it through the game, they’re paying more attention to the game and you have to answer the question. Then you elaborate and put out your card. You learn so much about the individual. If your child is non speaking, they can use a white board or a chalk board. There are so many different ways to accomplish engagement and communication in a therapeutic way, so they’ll come in and model that through Spectrum Success 911.

What Spectrum Success 911 does

Chele will do a peer-to-peer with the parents while Khylil would do a peer-to-peer with the individual on the spectrum. Early on, Chele’s daughter would also do peer-to-peer with the siblings. She’ll never forget hearing her daughter say that she was scared to have friends over because if anyone ever said anything bad about her brother, she knew she’d have to fight them or that their relationship would never be the same again. Chele didn’t know that was going on. So just to be able to sit down with the family is so great.

One of the first activities they do is called ‘The Elephant in the Room‘ activity where they tell a family that if they have not already discussed the word ‘autism’ they will be discussing how they felt when the word ‘autism’ came into their life without shame, blame, nor judgment. They write it down on a white board and then switch so everyone has a different board. Sometimes when there’s strife in the family, Chele says, we don’t hear what each other says due to ill feelings. But if the word you’re saying is somebody else’s, you can’t judge them. Then, for the next round, they discuss how they feel about what the other person wrote, and now they’re expressing empathy, Chele asserts.

Chele wants them to feel the love about what the other family member says, and that they can express freely what’s going on. Sometimes partners disagree on what to do. Chele says we have to meet people were they are first. The first stage when receiving a diagnosis is rejection, she explains. Then you accept it, then you embrace it, and sometimes you never get to the embracement. You can respect when someone doesn’t accept the diagnosis and Chele can then ask how she can help them and ask them what they need to get to a place of acceptance.

Do they need more information? More time? It’s a loving way to respect everyone’s opinion about things and help them to bring them up to where you are and respect where they are, meet them where they are, and still love them unconditionally. So much of this resonated with me, I shared with Chele. 

Behind the name and logo

In the beginning, Chele she was an advocate for another organization, but as Khylil was getting older, Khylil wanted to start helping families so they decided to start their own organization. Khylil is on the spectrum, he is successful, and the 911 represents that the diagnosis is an emergency because it comes into your family’s life and changes the way you live. Spectrum Success 911 is unique because they don’t just cater to the individual with the diagnosis; they cater to the whole family.

I asked them about the puzzle piece and why they chose it, given that so many self-advocates have disdain for the puzzle piece and it being associated with a loathed organization like Autism Speaks which began to ‘cure’ autism. Khylil has 8 years interacting with other advocates and he says he’s not generally against the puzzle piece nor the colour blue. The colour blue is both his and Chele’s favourite colour, but he also gets why people are unhappy with Autism Speaks.

He says that the puzzle piece in Spectrum Success 911 is a regular puzzle piece. For Khylil, he talks about taking your time discovering who you are and that it’s a puzzling world out there with infinite possibilities because there’s so much for anyone on the spectrum to do–you just have to give it time. The puzzle piece that Autism Speaks uses, however, is like a child with open arms. Khylil says it’s not just children out there. What about the autistic adolescents transitioning into adulthood? It’s a puzzling world out there for adults, but there’s a lot of things we can do if we can take the time to come together and paint a bigger picture, he says.

Chele has no ill feelings about the puzzle piece. She says that we’ve all heard the saying that when you’ve met one person with autism, you’ve met one person with autism. The puzzle piece is to identify that individuality. It also shows that when the pieces come together, it creates a beautiful picture. This stands out for her. It’s unique alone and it’s beautiful together.

She also thinks of the mental health side of it. Her daughter was diagnosed with Oppositional Defiance Disorder and Impulsivity. Chele says she doesn’t like the negativity that comes with diagnosis. What was hard for her, was that she couldn’t separate her daughter’s behaviours associated with the diagnosis from the diagnosis. She took them personally and thought her daughter was acting out because she was mad at her or something personal, whereas it was a behaviour that she couldn’t control.

Even with a puzzle piece or an infinity sign, it’s not personal, Chele says. It’s an expression of what autism means to that person. Everyone has their own voice and choice and should be able to express their own individuality without blame, shame, or judgment, Chele says. Use strength-based language of encouragement and empowerment rather than focus on a shape.

Part of the reason why I had Chele and Khylil on the podcast is due to our overlap of values between what they do and DIR/Floortime:

• strength-based
• holistic approach
• respect
• empowerment
• meeting the individual where they’re at (whether it’s the child, adult, or parent)
• respecting the individual differences
• focus on the relationship
• parents knowing their child best

Next time, in Part 2, we’ll hear more about some of the other work they are doing including The Ausome Movement: a safe space to share thoughts and experiences without shame, blame or judgement.

Thank you to Khylil and Chele for enlightening us about their journey, their purpose, and all they do to help families in Philadelphia and beyond. I hope that you learned something valuable and will share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below, and stay tuned for Part 2 next time where we’ll hear more about their work with families and the new Ausome Movement.

Until next time, here’s to choosing play and experiencing joy everyday!