Two parents and a sibling weigh in.
ActivateenCC is a series of community chats that seeks to bridge the intergenerational gap and promote greater understanding. We speak with parents, influencers, subject matter experts and connect the dots through the lens of generation Z. Our subjects range from well-being, work and everything in between.
In this episode of our community chats, we talk to two parents and a teen about autism to get a better understanding of their experiences, challenges, and how we can help as a community.
Erin: My name is Erin Morales, and I have lived with my husband in Austin, Texas. We have three daughters, our two youngest are 9 and 10, they still go to elementary school and they are typically developing children. Our oldest is 13, she will be in 8th grade, and she was diagnosed with a chromosomal abnormality when she was 18-months-old and she does have an autism diagnosis as well. She’s not verbal, she does have an intellectual disability.
I’d love to share what I know and do everything I can to make our community more inclusive.~ Erin Morales
Deb: I’m Deb Alexander and I have two children, one of them is my daughter Julia. My older son, Evan, was diagnosed with autism when he was 2 and a half years old. I didn’t even know that he had autism until Julia was born. I didn’t know any different. He is 19 years old. Evan has gone through the entire school system and he is aging out. He has two more years in the school system before he drops off the cliff of benefits and what the school has to offer. Right now, we’re scrambling and trying to figure out what’s next and what can we create because it’s not out there.
We, autism families, are on islands. I always joke that there are other disabilities that are very well-organized and all put together and they work together, but with autism we are all on our own islands and we don’t connect because we are all just surviving.~Deb Alexander
Julia: My name is Julia. I am Evan’s sister. I’m 17 and I’m going into my senior year of high school.
For me, it has honestly the challenges have provided me with great opportunities. My passion now is working with people with special needs, and I don’t think that I ever would have been involved in this community if it wasn’t for Evan. I’m working with the Special Olympics as an assistant coach and I’m president of my school Best Buddies chapter. I’m just very involved in working with people with special needs and I hope to one day work in the field of occupational therapy so I can give back to this community.~ Julia Alexander
Shaku: Julia, how do you find that schools react to students that have autism? Do you feel like they have everything in place? How do the other students behave? Some schools are having conversations on whether to have integrated or segregated systems.
Julia: I was actually in a peer assistance class in my sophomore year and I think that the school district does have a very good special education program but the capability of a lot of these students is far superior to neurotypical students, so I find it frustrating when these kinds of students are babied or treated differently in a bad way. I have seen some bullying, even if it’s not to these students’ faces, but it makes me very angry. So anytime I see something like that or when people use the “R slur” I am very quick to call people out and very quick to educate.
On the topic of segregation, I think that’s a terrible idea. I think that neurotypical students need to be adverse to seeing people with special needs and vice versa. I think that we both could feed off of each other and educate each other and learn from each other. I believe it will diminish the learning experience for both populations. I think schools should absolutely stay together instead and stay immersed.
As my daughter ages and as her peers age, that developmental gap just widens and it becomes more apparent, and I think it is more and more difficult to create a truly inclusive community within the schools as it relates to scholastic development and what these kids need. The challenge then becomes “How can you incorporate and create this inclusive environment while still providing the individualized educational needs that each kid absolutely needs?” You know, that’s the big challenge.~ Erin Morales
Shaku: Being working mom’s and having to attend your children with special needs, how do you manage as far as timing? How do you deal with stress?
Deb: I’m a single mom, so I don’t have a choice. I have to work, and I have to put a roof over my kids and my mantra has been “Take them to 18, take them to 18…” And I’m almost there!
As they get older, they get separated even more, and that’s when Evan notices. He notices when Julia goes to a party. He notices when she goes to somebody’s house. He notices when she’s invited to birthday parties and he’s not. And so, as he gets older, that’s when he’s really wanting to do more”
Shaku: How do you find all of this information? Do you do it alone?
Deb: What really helped me was that, when Evan was born, someone told me to put him on the lists, and he has been on these lists that have like 10,000 people on them. It’s a ridiculous number. As he grew up, it got to a point where I couldn’t keep doing it by myself, so I went to the state and said “I can’t do this by myself anymore! I need help!” And what happened was that the state was like “Oh, we have this magic money here we can provide for you.” And they bumped us up to the top of the list and Evan started receiving support. It was life-saving, and it’s really important to stress that without government funding we wouldn’t be making it right now.
Erin: The parental network is the biggest and best source. In fact, I don’t think you remember this, Deb, but when Lola was in pre K, I ran into you and Evan at the Valley View playground, and you were the one who told us to get on the lists. I remember I had a little piece of paper in my purse and I was frantically writing notes down on everything you told me that day, and you were a godsend. That’s how, I think, a lot of us have made it through, especially in the early years.
Shaku: As a final takeaway, what would be one request you have for people?
The biggest request I have for young people is that, if you know people that have special needs or that have kids with special needs, don’t be afraid! Ask “How can I help?” Get involved in their lives. Ask them if you can take them to a McDonald’s drive-through to get an ice cream cone or do something with them. Give that family a 3-hour break; a 1-hour break. Spend time with them. ~ Deb Alexander
Get to know them and make a commitment. Even though you’re going off to college, the special needs peers that you had been going to school with may not be going to college and you don’t know what their future is, but maybe make a promise to yourself that once or twice a year you’re going to hang out with them and visit and become part of their lives. In the Easterseals program Evan’s in, the biggest comment that all of these young people with autism said was “I wish I had a friend,” “I want a boyfriend,” “I want a girlfriend,” “I want to find true love.” They want the same things we want, and often people don’t even reach over to interact with them and I think we have to break that.
“Lola’s friends with kids that are 7 years old, and she’s friends with 65-year-olds and everybody in between, including the fishmonger at the grocery store. That’s Lola’s community, more than just the school. It goes a lot further than that, and it’s so important for us.” — Erin Morales
Shaku: We often think that we need to take these big, giant leaps, and all it takes is to reach out and say “We’re here” and actually mean it, and not just like a post about it on Facebook. Thank you so much for taking time today to have this conversation. It has been such a privilege to have the opportunity to talk to three incredibly amazing women.
Programs and resources mentioned on the podcast:
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