Part 2: Bridging the Gap in Understanding

by Affect Autism

This Week’s Topic

This week is Part 2 of our podcast with autistic self-advocate Khylil Robinson 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. Last week we discussed the work they are doing including Spectrum Success 911, connecting families with community resources and organizations of support, and Khylil’s autism self-advocacy. This week we’re getting into some examples and details of the work they have done with families including the Ausome Movement and Autistic Ambassadors.

This Week’s Guests

Khylil Robinson has been doing advocacy work in the city of Philadelphia since 2014. He is a Community Autism Peer Specialist (CAPS) with the Autism Service Education Resource and Training Collaborative (ASERT for the State of Pennsylvania) and a part-time blogger using the hashtag #ASDNext, which is part of the The Department of Behavioral Health and Intellectual disAbility Services (DBHIDS).

Michele Abraham-Montgomery has worked for the school district of Philadelphia for over 20 yrs. She also worked for Community Behavioral Health as a family support partner with High Fidelity Wraparound and she is a Family peer specialist. In 2017, she co-founded Spectrum Success 911 with her son, Khylil. Unlike other organizations, they provide a holistic approach because autism and mental health co-occurrences affect the entire family. Chele also co-founded Autistic Ambassadors (which we’ll hear about in Part 2 next time) with Eric Williams of Project Elijah Empowering Autism (PEEA), a program that they developed in 45 days to allow autistic individuals or those with mental health differences, aged 12 to 24, to participate in a 6-week enrichment pilot program which allowed siblings to participate to support their loved ones.

Being the Liaison

I first asked Chele about the team-based work that she did with High Fidelity Wraparound working with families, which really brings out the values DIR shares with her work. Just being able to be a neutral liasion, Chele says–not being on anybody’s side–she could help each side see the other’s view from the other perspective. She found herself in these positions where she had to have a neutral stance–even working for the school district, being a classroom assistant, a liaison, or a home-school representative.

She’s bringing two opinions together so they can work in harmony for the greater good of everyone. They ‘wrap around’ the entire team, making sure that the family’s voice and choices are heard, honored, and respected. They have to also understand the dynamics of system partners–not only making sure that the child’s best interests are being taken note of, but also what will work best for the family.

She remembers having situations where DHS (Department of Human Services) or a system partner came into her house where they didn’t ask any questions about her and ‘fix’ her when she didn’t acknowledge that she was broken. Of course you get push back, Chele explains, if you don’t show respect first and say, “Hello, my name is ___ and I have resources that I would like to offer to you, if you would like to.”

Give them an option, Chele insists! Don’t say, “If you don’t do this, then we’re going to have to do that.” That’s giving an ultimatum and bullying. And they’re supposed to be intimidated? If you back a mouse into a corner, what’s going to happen, Chele asks? It’s about the approach, Chele says, and respect for the family. Even if it’s what they need, she explains, help them to understand why they need it and let it be their choice.

When people think it’s what they want, they’ll go for it more. When they feel like you’re pressuring them to take it, they’ll refuse it, Chele points out. Give them all of the knowledge and information first, she says, and they brainstorm together, making them part of the process. “If you were to receive this resource, what would it need to look like for you to accept it?” Bring these types of strategies to the table to make the system partner understand that they can’t take away their integrity, Chele continues. They might need help, but they aren’t invalids or invisible, she stresses. In their minds, they were functioning fine, and this is an outsider coming in, intruding on their world.

Even if they think that what they’re coming in with is good–and it very well may be–but the family has to feel as though they want it and they need it to accept it. Don’t force it on the families. Chele says that we know the families need resources, but it’s about how we can lovingly let them see how the resource can be advantageous for their family.

Bridging the Gap in Understanding

I asked Chele about instances representing families with a school or a residential care facility where the family says they’re not listening nor providing what they need, and the school saying, “We told them to do this or that and they didn’t.” The most frequent issue that comes up at ICDL’s weekly Parent Support meeting that I facilitate is about this problem at schools where the child’s behaviour is misunderstood. The child is not being respected and the school isn’t understanding that the child isn’t able to do something, and that’s why they’re acting out.

Chele repeats that knowledge is power. She was called in to a school once where the teacher had given a student a zero on their paper, said that the child doesn’t do his homework, had the child standing in the corner facing the wall (which Chele says is now illegal–even if you remove the child from the group, the child needs to be facing the learning environment), says the child is always a distraction, and that the child is always moving back and forth and pushing his desk.

Chele asked the teacher to go over and push her desk the way the child does, asking what she feels? The teacher said she feels vibrations. Chele asked her to sit in the chair and asked what she felt. She responded again with ‘vibrations’. Chele stated that that sounds ‘sensory‘ and that maybe the child is having some sensory situations and suggested the teacher look into that by talking with someone about it because it doesn’t sound like attention-seeking behaviour. It sounds like some stimulation the child is craving for, Chele said.

She then asked the teacher to tell her about the homework. The homework was the question, “What do snowmen do at night?” The child didn’t do it because he said that first, snowmen are not real, and second, he is asleep at night so wouldn’t know if they were. Chele explained that for some autistic kids, ‘grey’ may be a challenge because they see things in a literal sense or in black and white and for that child this was true. Imagination can be a challenge and it might be that this child hasn’t accomplished that goal yet, Chele explained. He’s not going to be able to do that. Before giving the zero grade, dig a little deeper and ask the child what they mean by that, Chele said to the teacher.

The teacher had the child tested and the child was diagnosed as autistic with sensory issues. I commented that it’s amazing to me how little is known in the general public. To me, ‘neurodiversity‘ is common language, but I’ve mentioned it to people in my circles who are professionals, including professors, and they have never heard of it. Neurotribes by Steve Silberman was popular about 10 years ago, but it’s still not common knowledge, nor is sensory integration.

As Jackie Bartell says, we need to educate one-by-one. Chele says that to be honest, she would judge other parents as a shamer, blamer and judger until the situation knocked on her door. These words and terms aren’t meaningful unless they knock on your door. Chele wants to educate and empower people.

Khylil’s Stand-Out Experiences

I asked Khylil about his experiences that stand out to him. He says his role is independent even though he’s part of a team of people who aren’t autistic, but who might have autistic children. One instance he recalls was in a school where he did a presentation about the 6-9 concept where one person in the audience, who was 18 (and Khylil was 28), said that it was both a ‘6’ and a ‘9’. For Khylil, it was about how they both reacted. They were both very excited about understanding the answer.

Khylil continued that he has CAPS (Community Autism Peer Specialist) meetings every other Thursday but it’s more general autism community discussions. He talked about triggers and trigger warnings (‘TW’), such as flashing lights. He wanted to go over sight triggers. Another example is talking for way too long, he says, or moving while talking or accidentally swearing, and self-harming even though you’re exciting for something.

Another instance was recently on a Saturday meet-up where one person asked if Khylil talks to himself or tends to overexplain things. Khylil thought it was interesting because sometimes these are things he might not think of about himself. He said that it’s very helpful to look up the hashtag #ActuallyAutistic on social media. The hashtag #Autism might have general resources, he explains, whereas #ActuallyAutistic denotes those on the autism spectrum themselves and their experiences. He recently learned there about the difference between meltdowns and shutdowns.

A meltdown occurs when he doesn’t know what to do next due to overwhelm, whereas a shutdown occurs when you can’t take it anymore and do a full reset by stopping everything, Khylil explains. He gave the example of getting ready for an event where he hadn’t fully shaved and his mother wanted him to better shaved. The event was only 30 minutes away but he was already 50 minutes late. The shutdown happened when he just accepted all of that and thought, “Forget it. I can’t do it.”

What all lead to the shutdown, Chele says, was that she wasn’t happy with how he shaved so she went and shaved him. She says should have thought that she didn’t care what he looked like; it’s what he says that is more important. Instead, though, she was focused on the image instead of the purpose. She shares this story with families because for example, kids will want to wear a winter hat in the summer, and Chele says to just let them do it! Who cares!

The Ausome Movement

Chele has created the Ausome Movement which is a private social support group for individuals and families who have autism and mental health. She creates three posts each day, starting with a power thinking boost, courtesy of Stanley Greene from the Power Thinking Corporation. Then, she continues, there is a meme with the powerthinking boost which has a quote. Next, she adds a thought-provoking question to encourage engagement and conversation. Finally, there’s fun facts about the topic.

Chele gave an example of a recent topic that was about laughter in the ‘fake it ’til you make it’ sense, which in the autism world is called ‘masking‘, she explains. But in a card game, it’s called ‘bluffing’, she says (e.g., a ‘poker face’). She asks if we have to censor people’s authenticity? Can we allow them to be who they are without shame, blame, or judgment? She wants autistics to say what they mean and mean what they say, she says.

Autistic Ambassadors

Spectrum Success 911, together with PEEA, created Autistic Ambassadors. She felt it started in the red carpet way discussed last podcast. She was at a webinar where she connected with a representative from Work Ready and wondered if they would consider allowing those with an autism diagnosis participate. They said they haven’t done that before and they have no curriculum, but if they had one they would. She created it and they did it!

They had work readiness training and self-advocacy, self-efficacy, and a wellness piece where Khylil taught them how to make smoothies. In the morning they would come in and they had a sheet to fill out with how many hours they slept the night before, their mood, what they’re grateful for, and a journal entry about what they did the day before. They’d sit in a circle.

Being number 1 comes and goes. However, being first in history is our goal along our journey, creating cycles and creating a new path, conspicuously, for us, by us.

Autistic Ambassadors statement

If they stood up and presented something they’d get paid $10 in play money that looked real. They’d get $5 for presenting sitting down. They got $10 for coming in to work each day, and $10 for signing in. There would be chores they could earn their play money for as well. When they first started, Chele explains, the participants had no concept about money. By the end of the week, they were understanding the cost to charge for chores.

They would also have money-making moments where Chele would say that the bank is short on 1’s. She would offer a $5 bill for 3 1’s or a $20 for 3 5’s, for instance, but what they had to do was say what their profit was. So, if they received a $5 bill for 3 1’s, they made $2, Chele explains. They had a bank come in to do a financial literacy piece since they would be getting paid and getting a cheque.

They were also taught how to safely and successfully use an ATM machine, including checking your surroundings and putting in your PIN. They learned the difference between a debit card and a credit card. They had contests to see who made the most money in a day and they had art activities where they would bid and buy each other’s art work.

While they were there they kept their play money in a wallet, but at the end at an awards ceremony, they traded that in that incentive play money for a real $50 VISA card. But they also received real money, Chele continues. Ages 12 to 14 received $1000 for 6 weeks in real money and ages 15 to 24 got paid $11 per hour.

They had community sponsors like Children’s Hospital who came in and talked about Homelessness with them. They had peer mentors come in and talk about their experiences and stories. They also had dress for success days on Wednesdays where they would dress for the job that they wanted. If they came in in sweats, they could work at a sporting goods store. They’d get $25 for coming in dressed for success and more money for presenting about where they would want to work in that outfit. They practiced walking up to a teller, paying, and getting change going to a store.

I commented that Chele also has gained so many skills to market to marketing partners. PEEA and Spectrum Success 911 got athletic sponsorship from the Philadelphia 76ers to run basketball clinics for 2 years with Spectrum Success 911 doing family support.

Are Autistics Like Cats?

I mentioned that I wanted to ask Khylil what he thought about the comparison between autistic individuals and the personality of cats since I saw his cat come onto the screen earlier. Khylil says there was a book about cats being autistic. One time, he was talking about the book The Curious Incident of the Dog in the Night-Time, and somebody did bring up the cats book. Khylil hasn’t read it, but he compared some characteristics of cats and autistics.

Khylil loves scratching chalk as a stim and would dribble his fingers in his mouth to take the chalk residue out. He went on TikTok and talked about his stims including biting on metal, such as a utensil or a necklace, on the tip of his lip. He thinks of these things as being cat-like. He likes feeling the warmth and the cold, such as laying on the cold bathroom floor before starting his day. These are things he doesn’t really have conversations about unless someone brings it up, Khylil explains.

This week’s PRACTICE TIP:

This week let’s think about what we need to accept the supports and resources available to us.

For example: Are there supports and resources being offered to us that we just haven’t capitalized on? If so, what’s holding us back? Is it stress? Is it fear? Come discuss this at ICDL’s free weekly parent support drop-in if the time is convenient.

Thank you to Khylil and Chele for sharing more information about their experiences working with, supporting, and empowering 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.

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

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