Hannah Stitt sits with her two autistic children for a photo.
It came as no surprise to Hannah Stitt when her children were diagnosed with autism; the news just confirmed what she had already suspected, but as time wore on, being the mother of two autistic kids became a lonely experience.
That feeling of isolation led Stitt to start a Facebook page called “The Diary of a Tired Autism Mom,” where she could share the ups and downs, as well as advocate for autistic kids and their parents.
“Not having anyone around me who had autistic children, it just became like nobody really understood me … (and) my struggles,” Stitt said. “I wanted to reach out to other autism parents and make them feel like they can be part of a community, where I can validate (their) feelings and help them understand that it’s OK to feel these ways.”
Stitt, a Morganton native, created the page about six months ago and it already has about 8,700 followers. Not only has it helped others across the world find community, but it has helped Stitt feel less alone.
One of the things Stitt hopes to validate is that it’s also OK to grieve, “because sometimes autism does suck.”
“(My kids) regressed hard,” Stitt said. “I had a really hard time with that. We lost friends, we lost family, and we found ourselves staying in our house 24/7.”
Many children with autism regress socially and linguistically between about 12 and 24 months of age. Other skills can be lost as well, including the ability to use utensils while eating.
Stitt said the kids began having more and more meltdowns and were unable to handle being in public.
Autistic meltdowns occur when a person on the autism spectrum experiences intense sensory, emotional, or cognitive overload. These episodes are involuntary responses to overstimulation that can manifest as screaming, crying, or sometimes violent behaviors.
Stitt’s 5-year-old daughter is diagnosed with level 2 autism and is nonverbal. Her son, who is 4, is level 3 autistic. He is considered nonverbal, but is capable of speech that is mimicked, scripted, or memorized from videos he has seen.
“That’s kind of an argument amongst the autism community, whether or not he’s nonverbal,” Stitt said. “All I know is what he got diagnosed with … (and) he cannot communicate with us.”
As the kids regressed, Stitt said both of them chewed into the drywall in their home because of Pica, an eating disorder in which a person compulsively eats non-food substances that have no nutritional value. Her son is also prone to deliberately injuring himself.
“I have to watch him beat himself in the face. He’s completely blacked out his whole entire jaw, where he just punches himself all the time,” Stitt said.
Both children receive occupational and speech therapy. They also receive in-home Applied Behavior Analysis therapy.
Regardless, some days have been more than overwhelming for Stitt. There have been days where the kids screamed and cried so much that she called her husband home from work to help.
“I have found different women and dads all over the world … and they definitely have advice when I need to ask them a question,” Stitt said.
As advice to parents navigating the challenges of caring for autistic children, Stitt said there will be times when it feels like the challenges are never-ending, but everything will be OK.
“You may not feel like it’s going to get better, but there will be points when it’s bad and there will be points where it’s great. You just have to keep going,” Stitt said. “And if you can advocate … it’s better for the world to know about autism than not to tell anybody at all.”
Stitt’s Facebook page can be found here: facebook.com/Thediaryofatiredautismmom.
