Tony Mantor: Why Not Me the World
Jess Tuff: Empowering Autism Acceptance Through Advocacy and Empathy – A Mother's Journey in Special Education and Mental Health
Wed, 19 Mar 2025
Send us a textJess Tuff shares her emotional journey as a mother advocating for her autistic daughter while navigating the education system and societal stigma. Her story emphasizes the importance of understanding, acceptance, and the changes needed in how we approach autism, advocating for empathy and resources for families still facing challenges. • Jess’s experience in special education and her daughter's diagnosis • The significant role of therapy for both parent and child • Challenges with educators and the impact of stigma • The importance of individual support and understanding • Family dynamics and sibling relationships in autism advocacy • Hope for the future through technology and community awarenesshttps://tonymantor.comhttps://Facebook.com/tonymantorhttps://instagram.com/tonymantorhttps://twitter.com/tonymantorhttps://youtube.com/tonymantormusicintro/outro music bed written by T. WildWhy Not Me the World music published by Mantor Music (BMI)
Chapter 1: Who is Jess Tuff and what is her journey with autism?
Hopefully you gain more awareness, acceptance, and a better understanding for autism around the world. Hi, I'm Tony Mantor. Welcome to Why Not Me? The World. Joining us today is Jess Tuff, a devoted single mother, passionate educator, and dedicated advocate for mental health awareness, women's empowerment, and special education.
She shares with us her journey with her autistic daughter, the emotions that accompanied her along the way. Her story is truly inspiring, and I'm delighted to have her as our guest. Thanks for coming on.
Yeah, no, thanks for asking.
It's my pleasure. I understand you're involved in the autistic community. What do you do?
I work in a school in special education. I work primarily between the high needs autism room, where some people are like non, there's about five or six kids in there right now. They could be nonverbal, have sensory issues to children that are on the spectrum, but they're in the gen ed classrooms.
So I go individually with them to their classroom to help support them academically, emotionally, socially, to help them integrate. oh that's nice how long have you been doing this this is my second year at the school my career was in early childhood development i used to direct child care centers i did that for 15 years and started a substitute teaching company for that center the problem was
that it was hard to keep it staffed at certain times of the year. Other times, you would have an abundance of people, but there was times of the year where you had no one, and you can't be open without being in ratio with staffed children. So I...
would interview, hire, train, and then I would direct the substitute teachers based on their qualifications between centers based on the needs of the centers at that time. And then my daughters went into school district. So I quit my career and decided I was going to start my own business because I was running other people's businesses for so long. I knew how to do it.
Yeah, that makes total sense. When did you start your business?
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Chapter 2: What challenges did Jess face in the education system for her daughter?
I got to really support my daughters a lot more than parents normally do. I knew my oldest daughter was a little bit unique. There's that weird thing when you're a parent. It doesn't matter if you're an expert in the field. You have a bias. So it's hard to trust your own judgment. I asked people, do you see anything I'm not seeing or is there anything I should be aware of?
And they assured me, nope, nothing at all. There were a lot of other kids at that point in time showing some unique behaviors and emotional struggles. It wasn't until she went into the school district and it didn't really have that support system in place anymore. And it all went downhill. I really had to fight for her to be treated as an individual, which led me to where I am now.
A year on wait list, a year of being bullied for the diagnosis to get them to support her. All they had to do was have someone stand next to her outside at recess and help her.
What grade was she in school at that time?
Second grade. She's in fourth grade now.
Since she's been diagnosed, have you been able to get therapists and help for her so that she can integrate within the school system and with her friends more? Are better things happening for her now?
Yeah, she's been in therapy since before the diagnosis. She actually asked me if she could see a therapist that year. She told me what was going on at school. They were playing a game at recess. Her friend, it was called Danger. And the person that was Danger, everyone would point, laugh, and run away from them. That was the game. But she was always Danger. Wow.
So every day at recess, this was happening to her. And she'd always depended on myself or her sister to help her make friends and socialize. She struggled in school. It wasn't quite as accepting. After talking to a lot of different experts in autism, that's the age when the other kids notice you're a little bit different. So that was a really hard year for her to go through.
I got her on the wait list with Fraser after the school denied an assessment, got her in therapy. The next year after the assessment, she had the best teacher in the entire world. He really turned her opinion of school into something completely different. He's brilliant. He looks at the students like I look at children and their own unique individual characteristics.
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Chapter 3: How did therapy and diagnosis impact Jess and her daughter?
I totally agree. People have to have some self-reflection at times and realize that others need help and sympathy and empathy as well. Is this what prompted you to make a change to get into the schooling and become more of an advocate for autistic people?
So I got back in the school district. I think there was a little bit of that wanting to learn more because through the assessment process, I had to do all my own research. The process makes you feel like there's got to be something more that you're missing. It felt like I was breaking the law. asking for an assessment for information about her mental health.
I started therapy during it too, and I asked my therapist if I could be assessed if she did that. There was no response, which was weird because we had such a great rapport. It was confusing because everybody's so indirect. The more research I did, the more I found out that there's not enough research. with technology where we're at.
I'm really excited because I feel like we're at the point now where we're about to get data from everywhere around the world. And that's going to give us so many answers that we didn't have before. I'm looking forward to that.
Yeah, I think information is coming from all angles. That's truly great. Did you finally get a diagnosis or did they still push it to the side?
The assessment through the school, they declined an assessment and then I pushed and they finally gave her an assessment while she was on the wait list for Frasier. When Frasier gave her an assessment, she got a diagnosis of being on the spectrum. They encourage you to... Put your child in a community of neurodiverse individuals to embrace that about themselves.
For you as a family to talk about it, to embrace it in all of these things. It gave me a bit of freedom as well because it was such a scary process. I feel like the school is like you're doing something wrong. And I just don't quite understand it still. going to a therapist and having them kind of brushed off.
Her doctor had someone in network who could assess her for CBD or ADHD and not, but not autism. It was just strange how there's so many experts But nobody could help diagnose this. I'm really looking forward to a future where we can have honest and accessible diagnosis tools with technology as well.
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Chapter 4: How did Jess's advocacy evolve over time?
Yes, I agree. Unfortunately, it seems to be hit and miss depending upon where you live. Each areas have different amounts of money to spend, different things in place. So your living area is a big, big deciding point for that. Once you did get the diagnosis, and found she is autistic, did that change anything for you? Did you approach anything differently?
How did the interaction go between you and the doctor? How did the interaction go between you, her, and all the other people around you?
At that point, I was almost hoping it was diagnosed as that because it seemed so clear to me after doing so much research and checking all the boxes. There was so much self-doubt during the whole process because... I'm reading and everything points to yes, yet all of the people I'm talking to are not.
Everything that I was reading, it aligned with how I parented and how I teach to meet the child where they are and to support them how they need to be supported. I felt a freedom, like it was okay to parent the way I was parenting. which I didn't have before that because she had so many behaviors growing up. She had very strange behaviors that I didn't understand.
Like we would go to a softball game in the evening in the summer and she would be great the whole car ride, get her in the stroller. We'd be walking, we'd make it to the field and she would just lose it. I couldn't explain it. Everybody would look at me like I should get my kid under control.
I would always just leave and I would get judgment for that and not staying and making her be quiet or stop crying. Your child, when she's crying because something is wrong, there's something going on with her and there's no other reason for her to be upset. So it gave me some peace, really, that it was okay what I was doing.
Yeah, absolutely. How old is she now?
She's nine.
Nine. Okay. Some people, unfortunately, that do not understand autism, they don't know the difference between a meltdown or a child just having a tantrum. They don't realize when an autistic child is having a meltdown, it can last 10, 15, 20 minutes. Once that's over, then everything's okay.
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Chapter 5: What role does empathy play in understanding autism?
Oh, yeah, absolutely.
So what were some of the things that went through your mind before the diagnosis? And then what went through your mind after the diagnosis?
really is like a sense of hell like a torture to intuitively feel you are doing what's best and to the best of your knowledge to your abilities what I was doing would work she would we'd go in the car I turn on the AC and start driving and she'd be totally fine It was so confusing. There was a lot of shame. Their parents have a hard job.
And society doesn't always support them in the way that it should. It was hard. I did a weird thing during the hardest part of it. I really internalized most of it. I'm an introvert, naturally. I like my quiet time. I like my peaceful time alone to reflect. So I did that a lot. Once I had clarification of what was going on, it was like being set free.
I felt confident speaking up and out about it because I had the answer key. It wasn't me relying on I'm right and all the people are wrong just because I think I'm right. Because as we know, everyone has different perspectives. What one person thinks is real for them. So what is our reality?
You were so correct. I tell everyone that I work with, perception is reality. It may not be true, but is that person's perception of you, is that person's reality of you? How did you address some of those things? I mean... You know your child. You know what she's going through most of the time. How do you address those people knowing what you know without, as they say, blowing your gasket?
With the school, I think I was as close to blowing my gasket as I've ever been before. During the battle for my daughter, the treatment, it was, and it didn't make any sense. Like, I'm a really nice person. I remember even telling them that people like me normally, but this isn't right before we got the assessment done. I had enough of feeling like I was feeling. I had enough of being angry.
And I didn't want to hate anyone.
Absolutely. No one wants to do that. It's really a tough situation you were in. So what did you do?
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Chapter 6: How did Jess manage societal perceptions and personal challenges?
Oh, yeah. She always needs to wear cotton. No tags ever. The softball game was a lot of things. It was the heat. It's great now because she can explain things, verbalize what's going on. She... Heat's being hot. She loves to be cold. Textures, food, noodles with butter. She'll try new things when she sees me eating them. Sounds, smells. There's so many things, but they're at different degrees.
Some things are less visible to people, but that's because they don't know her. In the research I've done, women are really good at masking. were resilient and smart, were good at fitting in, did that. She still does it in front of people she's not comfortable with. I saw it when she got into second grade, how she would behave in front of strangers.
She stood up straight, smiled, and barely said a word, but just enough to make a good impression.
Yes, it is very well known that females are very good at masking. Now, what about focus? Many autistic people are very focused when they have something that they focus on. They just don't give up anything until they get through that. Is she very focused as well?
Growing up, she would watch one movie at a time for months. We had a 45-minute drive to my work every day. I had DVD players in the back for my daughters. I would have to force her to watch something new before she would catch on and then she would go with that one until I would get her to do a different one. But that was definitely it.
She definitely has several trampolines and different things that she can use to self-regulate. Bouncy chairs. She has movement, repetitious movement as well.
Yeah. So she has a sister. Is she neurotypical?
I don't think so.
Okay. Is she younger?
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