Written by Shalev White
Your child starts screaming and trying to find some place to hide. They may even start hitting themselves while they are crying. You try following them around, asking them “What’s wrong? Please, just tell me what’s wrong.” You desperately want to help them, but they seem unable to answer you. They may just make unintelligible sounds and stop responding to anything you say. This is so confusing, because you both just had a conversation about their favorite car. They told you all about the colors, the wheels, the shape, and described in detail everything they loved about it, but now you have a child who’s screaming, crying, hitting, and unable to speak to you, or if they do speak, it’s now extremely limited and difficult to decipher.
In this blog, you’ll read about the experience of an Autistic person (me), and things that have helped one Autistic child (my son). The hope is that you will gain understanding of what this experience might be like for your child, and what could do to help.
Perspective of One Autistic Person
Sometimes my brain just stops producing words, and sometimes there’s a disconnect between what’s happening in my brain and the words coming out of my mouth. This usually happens when I’m overwhelmed by my environment or my emotions. There can be too much happening in my environment which just overworks my brain and makes language difficult. Emotions are complicated for me. I often don’t understand how to describe my own emotions or understand others’ emotions (also known as alexithymia), and I’m not sure how to respond which causes a lot of anxiety. I can stutter or slur words, repeat a specific phrase over and over without it really making sense as a response, or just be unable to speak altogether.
When my brain is overloaded by my environment, it can feel like electricity is running everywhere along my body and my head just feels fuzzy and full of energy. I can’t concentrate on what you’re saying, and talking is like trying to find words on pieces of paper in a room full of thick fog. I have to search the foggy room in my brain for words, construct a sentence with the words I found, and then run to the door and throw whatever I found at you before more questions are asked or more things are said.
Sometimes when I’m trying to describe my own emotions, it can feel like trying to look something up on Google only to have the search results come back completely blank. It can be very upsetting to be sitting across from someone, have them stare at me waiting for me to respond, and my mind came back with an empty search result. The other person may even try to be helpful by saying, “it’s ok. There are no wrong answers.” I’d be happy for any answer at that moment.
Alexithymia – As a condition marked by lack of feelings, it can be difficult to recognize the symptoms of alexithymia. Since this condition is associated with an inability to express feelings, an affected person might come across as being out of touch or apathetic. This condition may also make it difficult for a person to interpret body changes as emotional responses. For example, the person might have trouble linking a racing heart to excitement or fear, but is still able to acknowledge that they are experiencing a physiological response in the moment.
Me stuttering and slurring my words happens often when I kind of have an idea of the emotions I’m experiencing and I’m trying to express it. I’m not exactly sure why, but the words just don’t seem to form correctly in my mouth when I’m upset. I’ve had people tell me to speak correctly, which just makes me shut down completely. I’m now hyperaware that I stutter or slur my words and I’m then also worried about how people perceive me in that moment. Do I sound stupid? Will they treat me like a child now?
Sometimes my brain will get stuck on a phrase and I will repeat it over and over again. This can happen for environmental overload or emotional overload. My brain will find one word or phrase that describes my emotions or experience and I will repeat it like a CD that has a scratch on it and is now stuck. I will say this phrase no matter what anyone says or asks of me. It can also feel like people are very far away, as if they are on the other side of a tunnel or I’m underwater.
At times my brain just decides to stop verbal communication altogether. I can sometimes feel myself screaming in my head, but no words will form. There’s so much chaos happening in my head that the words can’t find their way from my brain to my mouth. It can be very frustrating to suddenly not be able to talk when you normally can.
I have two apps that I use on my phone for these kinds of situations. One is a text app that allows me to text and then display the text on the entire screen. I like this one because sometimes sound is just too much for me, and I just want less sound so I can think better. The other app is a text-to-speech app. This one is nice because it allows me to save phrases. I can have a phrase such as “I need some space,” saved in the app, and then I can just touch it rather than needing to type it out each time. That is very helpful in high stress situations when I need people to go away for a minute.
Perspective of One Autistic Mother
My son often has difficulty communicating when he’s upset. I understand this from my own experience. I always offer him the ability to take a break if needed. He has cards that he can use if he needs them, and I don’t get upset with him if he needs to script or repeat things when he’s upset. I would think about what I would’ve wanted as a child, and then provide that for him.
I remember constantly wanting space to just think rather than be forced to respond in that moment. I remember saying things wrong because I just said the only thing that would come to my brain. So with my son, I am very conscious of giving him breaks and then talking to him later, or try and work on a different way to do things when he’s not upset, such as showing him that he can point to pictures when he’s upset.
I made sure to have a specific place he can go to when he’s upset and just needs to be alone. I recently cleared out a section under the counter where the recycling bin used to be. Then I used a thin blanket as a “door”. This allows him to have a small dark place just to himself whenever he’s overloaded. He feels calmer there without people looking at him or expecting things from him, and I know where he is, so I don’t have to worry that he’s trying to hide in a place that’s not safe for him.
How You Can Help Your Autistic Child in Their Non-Verbal Moments
Some of these you may already do, and if so, wonderful. The best tip I can give you is to listen to what your child needs. Each child will need different things and respond to different things.
Calming Sensory Room
This doesn’t need to be a separate room. It can be part of a room that is turned into a “sensory room”. Have some designated space that your child can go take a break. For my son, that is an “Alone Time Space” in the kitchen. Having a designated space set up for this makes it easier for our brains to recognize that this is available. If there’s not a designated space for this and you just tell us to “go take a break”, that one more thing for us to figure out while we’re upset. Our brains already feel like they are exploding and now we need to figure out where to go take a break and how we’re going to do that.
Have some form of non-verbal communication available for the times that your child’s brain just can’t do words. This can be sign language, AAC, PECS, cards, or some other communication app. Just go with whatever is the most comfortable for the Autistic person.
Allow Frequent Breaks
Having that designated space will make allowing frequent breaks easier. I know that it may seem like your child is always needing breaks, but we have many different sensory issues to deal with and your child may not have the ability to communicate that to you. I remember thinking that most of the things that I experienced were just experienced by everyone. I didn’t talk about many of my issues because I just thought they were normal.
Testing Autistalline Glasses:
(Disclaimer (this section will be the same in all blog posts) I was given an tester pair of Autistalline, Autistic Sensory Overload glasses. They are for investigational purposes only and are not available for commercial use since they are not yet FDA-Approved. I write about my experiences with the glasses and all experiences and opinions of Autistalline Glasses are my own. I am not paid to test the glasses on me or my son. I am compensated for writing blogs and producing content. All contents in the blogs I write and post on this website are actual recounts of my daily experiences as an individual diagnosed with Autism. Each experience will vary from person to person with Autism. Any content contained in this blog is for general informational purposes only and is not a substitute for medical advice, care and treatment. Please consult your healthcare provider.)
While I am a verbal Autistic, I can come across as a non verbal Autistic at certain times. When I’m overloaded by my emotions or environment, speech can either be extremely difficult or just impossible. This is very frustrating for me, and then is confusing for those around me. They can also get frustrated with my inability to speak, which just makes me feel worse about everything.
When I’m wearing the glasses, I can still have moments where my brain just can’t produce speech. However, this doesn’t seem to last as long and I seem to be able to recover quicker. I’ve also been in situations where I normally would need my phone to talk and have been able to talk just fine, which is a very strange experience. I’ve grabbed my phone out of habit, and then realized that I didn’t need it.
Help Us Get These Autism Glasses Made
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The use of the Autistalline Autistic Sensory Overload Glasses is for INVESTIGATIONAL PURPOSES and is NOT AVAILABLE FOR COMMERCIAL USE AS THIS DEVICE IS NOT YET FDA-APPROVED. Further, Autistalline LLC does not claim that the use thereof as depicted in the videos is reliable, safe, or effective for uses being investigated. Autistalline Autistic Sensory Overload Glasses carry a risk of failure and adverse consequences.
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