a pair of glasses lying on an essay and a textbook

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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When your child receives an autism diagnosis, there can be a lot to process. But one thing I didn’t really think about was how others would react to my daughter Tink’s diagnosis. Of course, the vast majority of people are well-meaning, but unless they have personal experience, it can be difficult to know what to say or how to react to the news. In my experience, there are several things people will say to parents when they hear of their child’s diagnosis. Here are some examples and suggestions of things to say instead.

“I’m sorry.” This is probably the phrase I heard most often immediately after my daughter’s diagnosis. Most of my closest friends and family haven’t had a lot of experience with disability or autism specifically. Most people who saw me for the first time after Tink’s diagnosis began a conversation with, “I’m sorry to hear about Tink…” Of course, it was the beginning of my personal journey too, and I didn’t know any better, so I’d just nod and say, “Thank you.” Now, of course, we’re 18 months on and I’m not remotely sorry she has autism. It’s what makes her the fantastic person she is! I can’t imagine her any other way, and we certainly don’t need people’s pity. I’m not ungrateful, though. They meant well and were probably, like me, wondering what a diagnosis would now mean for our family.

What could I say instead? Instead of saying, “I’m sorry,” try asking that very question. “So, what will having a diagnosis mean for you all? Will it help?” Or even, “How do you feel about it?” Really, I had so many emotions running through my mind, I would have liked someone to ask me so I could have unburdened some of that.

“Oh, you can’t tell!” This is one that gets me just a little bit riled! It’s another statement well-meaning people tend to say without thinking first. Yes, while it is possible to spot that some people have a disability or difficulties in some areas, autism is a neurological condition and, as such, is an invisible disability. I’ve heard it several times about Tink. I’ve even taken to telling people that, “no, it’s amazing how she just looks like a little girl, isn’t it?”

What could I say instead? If your first instinct is to say something about how you can’t tell, it’s probably best not to say anything.

“Oh, like Rain Man?” No. Not like Rain Man. Like my child. Just like everyone else, one autistic person is different from the next. We’re all individuals, and that includes those on the autism spectrum. While the film “Rain Man” thrust autism into the consciousness of those who never even knew it existed, it’s just one (Hollywood-style) interpretation of one person’s condition.

What could I say instead? “Tell me more about him,” is a good start. We parents want to gush to others about our kids. We want to enthuse over how she tried a new food, or how he learned all the words to a particular episode of his favorite program. We want to celebrate how diverse our children can be. Heck, that’s why so many of us have blogs and Facebook pages! Ask us!

“What’s her special talent?” This is another one that most likely stems from “Rain Man.” People with little experience of autism often have the misconception that all autistic people have a special skill or talent. Many can have “special interests” or “obsessions” or can be exceptionally gifted in one area or another. But everyone is different and has different abilities.

What could I say instead? Try asking, “So, what kinds of things does she like?” or, “Is he interested in anything in particular?” That way, if the child does have a certain affinity for something, it gives us parents a chance to talk about it.

“I don’t know how you do it.” If I had a pound for every time I’ve heard this gem, I’d be sunning myself in the Seychelles instead of sitting here writing this! It’s another well-meant comment, but really, think about it. We do it because we’re parents, just like you. Our purpose is to make sure our children are fed, clothed, hydrated, warm, healthy, educated, stimulated, happy. Just like yours. Yes, it can be tough. Being a parent is tough! Yes, autism can bring its own set of interesting challenges, and there are some hard days. But along with those difficult times, there are many, many wonderful ones, too.

What could I say instead? Perhaps ask about what help we get. “What sort of support network do you have?” Obtaining support services can be challenging. That’s the difficult part, the part that would make the actual parenting part that bit easier. And if the person you’re talking to says they have no support, then perhaps you can help them? You could be a listening ear from time to time, or even help them to find their nearest support group so they can chat with other parents just like them.

Next time you meet a parent and you hear their child is autistic, please, please consider this before you speak. We know people mean well, and we welcome questions and comments, but some are more welcome than others.

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Upon receiving my diagnosis of a lifelong disorder at 58 years old, I’ve had almost that many years of life experience to review. It is an ongoing recollection of past and present episodes and how they relate to my diagnosis. I was relieved at having an explanation of why my behavior is not in step with my companions. Knowing it had a name took away the long-held notion of being from another world.

On the bright side, I believe there is a strong connection between my strengths and talents with autism spectrum disorder (ASD). My passion for writing has taken off since my diagnosis because I know have a story to tell. This passion is one thing I have ASD to thank for. My tendency to hone in on details instead of the big picture was an asset to my once-held favorite job as a library cataloger. I fondly recall the one who taught me cataloging telling me, “You’re a natural.” Now I know she was right and why.

However, after weeks of celebration of being given this diagnosis, I am reflecting, too, on the dark side. It isn’t all positive for me.

An everyday challenge for me is verbal instruction. It is hard for me to take in and process when given little time to respond to a list of instructions. I now know why that is, but it doesn’t turn off my inner panic button. If I act on the instructions without questions or clarification, the odds of having heard it right are not in my favor. When I get it wrong, I feel a crushing blow, and it seemingly takes forever to get the memory of it to stop replaying in my mind.

Sensitivity to certain noises is annoying. I don’t mind hearing loud music provided it is my music that’s playing. I don’t know why someone’s stereo in the other room or next door can make me feel like a cat whose tail got caught on a chair leg.

A meltdown doesn’t walk in. It breaks in! It can come from out of nowhere. For me, it often breaks in at night. I wake up and feel trapped in my bed. The pillows and sheets are attacking my skin. I get up and throw the pillows across the room. I know what’s going on, but my knowing doesn’t stop it.

The reaction of those in my inner and outer circle has been mostly positive, but some responses were unsettling. Some respond with, “Well, most people probably have at least a little autism.” Maybe they were trying to make me feel better, but autism isn’t the common cold. I take my diagnosis as a life-changing event, whereas some seem to suggest it is a blip on my life’s screen. I also get the response, “But you look so normal.” Well, there are countless disorders that don’t have neon signs attached to them.

I realize if I go down the path of “what might life might look like now without ASD,” I am headed down a path with a depressing dead end. I tell myself no one has it all.

The positive is there are ways to tackle the dark side. When given a list of verbal instructions, I try to ask or repeat what I believe I heard the person say. When invaded by a meltdown, I try to sit somewhere, take deep breaths and rock… and say a little prayer too until the storm passes.

For me it is both bright and dark living on the autism spectrum. But that can be true as well for people not living on the spectrum. It is an old saying that is so true that one has to take the sour with the sweet. But oh, I am so thankful for the sweet.

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