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Navigate Life Texas: Resources for kids with disabilities and special needs
Navigate Life Texas: Resources for kids with disabilities and special needs
Parenting a child with an invisible disability can be challenging and overwhelming at times. It is also rewarding and a journey filled with love and laughter. This page focuses on what an invisible disability is and shares thoughts from other parents about some common challenges you or your child might run into and where to find support.
Read on to learn more and check out our video on invisible disabilities for more parent stories and tips.
An invisible disability is a physical, mental or neurological condition that is hard to see from the outside which limits or challenges a person’s movements, senses or activities. Many times, others will not understand an invisible disability until they take the time to get to know a child more. Your child might have symptoms with no diagnosis yet. They might get a diagnosis when they are very young or they might get an invisible disability diagnosis as a teenager or a young adult.
There are thousands of diagnoses that are called invisible disabilities. They affect a person’s hearing, sight, brain or other part of their body or senses. The most common invisible disabilities in children include mental illness, autism spectrum disorder, chronic pain or fatigue, mild cerebral palsy and learning disabilities.
“When you look at him, you see nothing. He looks like every other preteen kid out there.”
“It’s not like we want our children walking around with a sign around their neck about their disability, but without that, people have set ideas and expectations for how they should act.”
Just the same as diagnosing a visible disability, a doctor or mental health clinician will meet with you and your child to learn about their symptoms and concerns. They may run tests or ask you to see a specialist.
For more about getting a diagnosis and first steps after that, see our pages on:
Especially in young children, it’s helpful to watch for developmental milestones or things a typically developing child would do around a certain age. Your child’s doctor will ask about these.
For older children, teenagers and young adults, symptoms might look like a change in their behavior or struggles at school or with friends.
Any time you have a question or concern, talk to your child’s doctor. The earlier you have answers, the sooner you can learn to help your child grow and thrive.
“For years, the teacher thought he had ADD [attention deficit disorder]. And because we’re Hispanic in a mainly White school, I thought maybe my child was being singled out for being a little more rowdy, showy, a little louder. It turns out, he does have ADD, but it was hard to really know and accept it at first. The doctor did eventually diagnose it.”
Parents tell us one of the hardest parts of having a child with an invisible disability is having to deal with misunderstandings. This includes the many times friends, family, people in school and people in the community don’t know or believe your child has a disability. It’s so incredibly frustrating.
We have collected some quotes and wishes from parents below, so you know you’re not alone.
“When your child has an invisible disability, it’s also a struggle to sort through all the advice you get – the advice you ask for and the advice you get even if you didn’t ask.”
“It can be so tiring to have to ask over and over again for the same accommodations at school because they don’t see her disability. As she got older, one of the most important things I did was to teach her to speak up and advocate for herself.”
“When we’re out in public, people are aware of our oldest. They see his wheelchair and it’s apparent he has a disability. People help us. They are friendly with us. They talk to us. If my youngest starts screaming in the middle of the store, it’s completely different. People don’t help us. They aren’t friendly to us. They don’t talk to us. In fact, they’re usually quite rude. They stare. They move away. They whisper to each other.”
“Because my child is a Black boy and his autism disability is invisible, I worry about him in public, especially if he starts to have a tantrum. People look nervous. Will they call the police? CPS? Do they see him as a threat?”
“I have family members who refuse to believe there is anything going on with my sons. Either they think I medicate them because I’m lazy or that the boys are spoiled and overindulged.”
“The school nurse thinks I should discipline her more to make her realize her bathroom accidents are serious as a 4th grader. She already knows, and I know it’s not a discipline issue. Trust yourself even if other people have strong opinions.”
“People ask me, ‘Why do you take her out in public? You know she might be hitting, screaming, touching other people,’ whatever it might be. I say I can’t bubble her; she has a social personality and wants to be around people, and she has a lot to teach others.”
For times when you’re out in public, our page on When Other People Misunderstand Your Child’s Behavior has more tips to help.
Parents of children with invisible disabilities have these wishes for other people:
“Don’t judge.”
“Don’t assume you know about my child and what’s going on.”
“Don’t assume I’m neglecting my child or don’t know their needs and challenges.”
“My need to support my child far outweighs the need to discipline him the way you think I should.”
“Just because she looks OK doesn’t mean she doesn’t struggle.”
“Above all, be kind.”
To find help and support, connect with other parents of children with invisible disabilities. Your child might also want to connect with others with invisible disabilities. As they get older, help them practice speaking up and advocating for their needs.
Also, if you want to and think it will make your life easier, you or your child can have some information about them ready, like a note card or a few quick things to say when your child meets a new person. If your plate is full with caring for your child or you just don’t want to, know that you don’t have to say anything to explain. You don’t owe anyone an explanation.
“If the outburst or behavior is under control and you feel like it, try to take the time to educate others. If not, simply ignore them. Some parents have cards printed with a short explanation of their child's condition and a link to a website with more information. Then they don't have to say a word.”
“It took me a while to realize I could not teach every onlooker a lesson on autism on the spot and deal with his behaviors at the same time. I had to be unapologetic and go about what I needed to do.”
“The smartest and bravest thing a mother I know ever did was to meet with new teachers and speak in front of the class to explain her child’s disability so they were ready. It made my child and everyone else more at ease. They knew what to expect.”
“Let the people in your community and everyday life know about your child’s condition.”
The Invisible Disability Project has stories, information, photo art displays and more to support people with invisible disabilities and their loved ones. They also offer a way to solve misunderstandings with a pause, ask, listen approach other people might use to understand your child better.
When so many disabilities are invisible, a little patience and openness can go a long way to understanding. As one parent said:
“Remember to be patient and kind with yourself. You are not a bad parent. You are doing your best. We have to learn to be tougher. It’s hard to be judged, but there are good people out there too.”