Sometimes it’s frustrating being an autistic person. Sometimes neurotypical friends and family members can have a hard time understanding me. I don’t blame them, they are not in my body, so they can’t feel what it’s like to have ears that are like microphones, and what it’s like to feel sick when I smell a certain scent (mashed potatoes for instance). I keep quiet about being autistic or if I’m feeling bothered by noise. I don’t tell people because I’m afraid that they will be upset.
Once I was in sensory overload and people wanted to help me. I wanted to talk to them, but I couldn’t talk. I was so overwhelmed by noise and anxiety that I lost my words. People in my life who aren’t on the autism spectrum also have a hard time understanding why I need “routine.” Routine is my way of having predictability, which reduces anxiety for me. If there are multiple changes, I get anxious. If there are too many changes, then there is a possibility of having a meltdown.
The best thing for me to do is to be patient with them, even if I am super frustrated or anxious. I have to realize they are not autistic. Some people in my life are starting to understand me. I try to explain what it’s like to be autistic in terms they can understand. Even just turning the volume down on the radio can be helpful for me.
I may not be understood all the time, I may feel frustrated, I may have sensory overload multiple times, and I may have anxiety. But I will keep pressing on. I want to develop my talents and enjoy life, even if life throws me a lot of curveballs.
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ABL Denim, which creates jeans for adults who use wheelchairs, has expanded their offerings to include jeans for children with sensory sensitivities.
I remember writing a letter to a health professional about a lapse in communication that resulted in issues for me, and after the initial burst of energy, I came to the conclusion that the real benefit would be if mutual understanding could be improved, rather than just an improvement in consideration towards clients.
After I wrote this letter, I seriously started to think about the litany of doctors’ and allied health appointments I’d had throughout my life and how they’d brought me little benefit. I would go to the doctor knowing I was sick, having put off going because I could not afford the cost of the consultation. I would arrive at the doctor’s office and sit for eternity in the waiting room, looking at magazines that were almost as old as me, all the while trying to remember the reason I was there and what my symptoms were. Sound familiar?
Doctors’ offices can be a special kind of sensory hell. I have sat in long, thin ones where everyone kicks your legs as they walk past; I have sat in ones with what felt like 3,000 screaming kids and only one toy. I have even sat in a doctor’s waiting room and enjoyed his free dust, great for the asthma; it helped me forget the reason I came. It was such a confused visit, during which the doctor treated me for asthma, spoke about some surgery I didn’t need and offered me a cigarette.
A problem for me all along was that I would get a doctor’s appointment, go to the doctor, the doctor would ask questions, I would answer the questions, and I would leave — but really I’d be no better off. Family would ask if things were OK, or what did the doctor do or say. Mostly my answer would be “I don’t know,” or “Nothing really.” On some occasions, friends and family would listen and say, “But you went to talk about this, and you said the doctor talked about that. What happened?” I could never really come up with a concrete answer; the whole process always seemed so imprecise, so ethereal to me.
So what was going wrong? For what reason was I not getting the help I so desperately needed for years? What was wrong here? I started to watch medical shows to self-educate to see how other people were getting assistance where I could not. I learned a bit, but not a lot. I suppose I should say I learned I may have thrown away some perfectly good doctors and other allied health professionals in my quest to get help.
My struggle with communication is exacerbated by my difficulties with theory of mind and my problems with executive function. Theory of mind, as it relates to my autism, can be characterized by an impaired understanding of another person’s understanding, or their perception or cognition. To give an example, when I was young I believed myself to be the only soul in existence who could hear themselves inside. I thought others only reacted to each other. As an adult, I know other people think and have experiences, but I do have those moments where it all falls down, and this can include going to see health professionals. Executive function, as it relates to me, affects my ability to pay attention, to listen, to remember in the short term, to be organized, and especially to meet deadlines. Having strong deficits in executive function for listening, paying attention and working memory impacted the outcomes of the consultations with my health care providers, because I could not amass any information, and what little I had, I could not organize in any meaningful way.
I thought about the outcomes of years of failed consultations, and being a visual person who is able to replay the consultations like a video cassette, I thought I should do this and see what I might learn. I like to pick days almost randomly at times and just replay them; it is a nice thing to do and I enjoy it. I found replaying doctor and physiotherapist visits was not very stimulating; however, I learned some things. In one consultation, the doctor knew I had studied paleoanthropology and was probing me with questions relating to bones of hominids, while I was paying for a consultation. I left with no treatment and no answers that time. That is one of many examples of me being off topic or tangential, though I try and keep it under control.
Another discovery from my reflections was that I was not clear in my communication. I actually mean a couple of things by this. Firstly, I did not have clear communication internally. I do not always understand where my pain or ache is, or if it is still hurting, so please do not talk to me about that Likert scale. Secondly, I don’t clearly express that I have pain, that the pain is severe, and it seems I do not have a working vocabulary that other people can comprehend in order to understand what my pain feels like and where it is. Thirdly, I don’t understand that the health professional doesn’t understand me. The concept of “express and then query understanding” has been completely missing for me. Conversely, when a health professional has tried to seek understanding with me, possibly because of my autism, I am more likely to answer “Yes” without comprehending their questions.
I cannot begin to express how important it is to understand a question that a health care provider asks. If you do not understand, or like me you tend to immediately forget someone’s question, it is crucial to express that you have difficulties understanding. Then ask the health provider if they can explain the question differently, and keep doing this until you understand what it is they are asking. Many times they will accommodate this. Do not be shy. The best outcome is that you get what you need and they learn from the experience. There really is no embarrassment in asking or re-asking for clarification. You may need to resort to alternative means of communication and get them to write down the question. It can be dangerous to your health for the health provider to have the wrong information, not to mention far more inconvenient to you to have to clarify at a later date. Your health is literally in your hands, and health providers act with knowledge and permission that you provide to them.
So this led me to the realization that some of us on the autism spectrum may not be particularly good at describing where it hurts, or how we are affected. Sometimes, for some of us, we have enormous problems describing just what is the exact health concern that has been troubling us.
Sometimes as an Aspie, I just don’t know that there have been contributing stresses and pain factors, because I simply may not be able to recognize them. In other ways, there are problems with getting the right kind of assistance when you do recognize discomfort or pain if you are not transacting with the “correct” vocabulary. It seems there are glossary “definitions” for certain kinds of aches and pains that are like a golden ticket to getting medical problems addressed. Once I understood and began to build a glossary, I was able to use words like “gripe” to explain my problems. Because of this improved communication, I was able to get attention for problems that I had not been able to get help for in years.
Doctors are not mind-readers; they can only know how you feel from what you describe, so a common ground in terminology is so very important. But what if both parties have a different understanding of a word? Or the autistic client doesn’t even know to use certain words? The doctor could be listening for words like griping intestinal pain, but be given “I am feeling the noise of machinery. It is burning without temperature, but I am not sure where exactly.”
I’ve found a mismatch in vocabulary can add months or even years to the process of diagnosis. Doctors are expensive, and the visits may not be frequent, so if you are able to, it is important to try and get some glossary words.
What if you are not a person who “gets glossary words”? Well, if you are stronger with your written communication than your verbal communication, then you could take your key symptoms and put them down in note form. Bullet point items on a note pad or on your smart phone, and take them to your doctor.
In my experience, most doctors will tolerate you reading symptoms to them; they are often interested in getting as much information as possible. How many of us have forgotten important symptoms to relate to the doctor because of the stress related to communication or being touched during a medical appointment?
It is a very real problem that people on the autism spectrum can fall into a cycle where they go to a doctor and leave with an unclear diagnosis, because the doctor is unable to understand the level of pain or symptoms, or even that there is a problem.
Some of us are perfectly able to speak on all of the issues, but in our own vocabulary, and only in our own heads before the medical appointment. However, when the time of the appointment comes along, we can be struggling for words, and the words we do use may not convey the impact to the doctor. So maybe the best path is to take as much supplementary information as possible.
The kind of supplementary information that has worked for me has been things like making symptoms tables, and drawing diagrams of the affected area and putting “pain lines” through the affected areas. You can make the “pain lines” thicker and darker for more pain and lighter for less pain, and place a legend on the diagram. You could take photos from magazines of people’s bodies or faces that indicate the area or expression of what you are feeling. In this way, you can point to something and say, “See this lady’s face? Well, I feel like that.” Or you can point to a picture of a person’s back from a magazine and say, “It hurts exactly here when I sit and tie up my shoes.”
You can take handwritten notes, you can make pictures, and you can take props or even a symptoms table, which includes answers to the types of questions you will face in the presence of a medical professional. I suppose the key thing is to make some preparation beforehand, so that you have some of these items ready to speak on your behalf at that critical time when you are with the doctor or allied health professional.
Please look after your health.
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I am tired. Tired in a way that is different than any tired I have known before. A deep tired. A tired that is beginning to feel permanent.
Six months ago, my 4-year-old son slept through the night. And then one night, he just stopped.
We learned his lack of sleep was related to his autism spectrum disorder, something I didn’t realize could be associated with autism before this. It’s one of the many things along this journey that I did not see coming.
The autism in our life looks different than the autism I learned about in textbooks. I had a pretty clear vision of autism in my head. It was filled with all of the buzz words: “fidgeting,” “nonverbal,” “rigidity,” “savant intelligence.” In my mind, autism looked one specific way. I thought I would see autism and recognize it instantly.
I never imagined I would live with my son for two years without recognizing his autism. But I did. Because autism is anything but textbook.
I’ve learned autism can be ever-changing. It can look different from one moment to the next. It is complex. It is intricate. It is so many things entwined together inside of my beautiful little boy. And just when I think I have it figured out, it can become something different.
That is what happened with sleep. Our son began sleeping through night consistently at 8 weeks old. And then all of the sudden six months ago, he just stopped.
As a parent, there are times when you expect not to sleep. After bringing home a newborn baby, you know there will be sleepless nights. When our children are sick, we often anticipate there may be some spotty sleeping going on. When we stay out way later than 30-somethings with two young kids should stay out. Because the later the parents go to bed, the earlier the children wake up.
These sleepless moments are an inevitable part of the parenting journey. You expect them. You are prepared for them. When our 4-year-old son stopped sleeping as a part of his autism spectrum disorder, we did not see it coming. We were not prepared.
So for the past six months, we have been fighting through the sleepless nights and the exhausted days. We exist in a tired haze.
Our son sleeps through the night about once every three to four days. That night of sleep is bliss. He sleeps a full 10 or 12 hours. We wake up in the morning ready to take on whatever the world throws our way. The nights in between are not so victorious. We typically spend three to four hours awake coaxing our son back to sleep. And by the time we finally help him back to sleep, it is time for the parents to wake up and start the day.
We have tried many things to help counteract our son’s sleep challenges. Some remedies work right away and then taper off. Some remedies never work. Sometimes, we are not sure if a particular thing is working or not.
We have tried essential oils (in any and every combination possible), melatonin, reduced screen time, removing sugar, aroma therapy, calming music, white noise, blackout curtains, weighted blankets, compression clothing, etc. You name it, we have tried it.
The best stretch of sleep over the past six months came just after we introduced essential oils in a diffuser. We slept through the night for 10 nights in a row! We were convinced we found the right method. We were ready to happy dance the sleep deposit all the way to the bank. It was awesome. Until it stopped.
Some days I am so tired I could just cry. But our own exhaustion is not even the worst part. The hardest part is watching our little man struggle through his tired haze. It is seeing his behaviors at home and at school increase as a result of his limited sleep. It is watching the emotional roller coaster that follows his sleepless nights.
So we stock up extra on bold coffee and patience. Coffee for us and patience for each other. Because we are all tired. And nobody can be the best version of him or herself when tired.
We take our sleep when we can get it. We keep trying new things. We keep fighting through the exhaustion.
We are tired. The tiredness can make everything feel heavier. Magnified. But we just keep pouring the coffee and fighting forward. One sleepless day at a time.
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Anova, a nonprofit organization for children with learning and sensory differences, provides restaurants with sensory-friendly dining kits to help children with autism avoid meltdowns.
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