It Doesn’t Vanish at 18

As I’ve been working on research to support activities being done at work, I am noting an alarming trend. Most supports, groups, and initiatives are only focusing on Autistic children. Although it is necessary to support children as they grow on their path to adulthood, there is a terrifying precipice at the end of the road. Once someone becomes an Autistic adult, they are left under-supported and dangling without a safety net. This appears to be due to the fact that Autistic adults are not the ones featured in fundraising or educational materials about Autism. Rather, people tend towards the images of young children, lost in their own worlds or screaming and crying in meltdown. This is a damaging and dangerous trend.

Autism does not simply vanish at adulthood. The belief that Autistic adults do not need similar supports after the age of 18 or 21 is not only false, it can have devastating consequences. Consider the number of Autistic individuals who suffer from chronic mental illnesses such as anxiety or depression. 85% of individuals with Autism have been diagnosed with at least 1 anxiety disorder. In addition, people with Autism are 5-10 times more likely to die by suicide than any other group in the world. In fact, it is one of the leading causes of death in Autistic adults and is a large contributor to why the average life expectancy for an Autistic person is only 55 years.

Looking at these numbers and the fact that the numbers skyrocket after the age of 18, the fact that the supports do not exist for Autistic adults becomes a primary suspect. The sensory needs of the child do not disappear once they reach adulthood. They will not suddenly be able to “handle” loud noises or bright light, or no longer need special clothing to alleviate the severe pain caused by their sensory issues. The social skill issues will not vanish, making them easily able to navigate the adult world of dating, marriage, and career. The executive functioning deficits that may be present are not suddenly solved once the 21st birthday has occurred. Rather, Autistic people are basically thrown out into the streets on their own, in a world that believes there is “nothing wrong” with them and they should be able to just “deal” with it and act like everyone else.

I hypothesize that the consequences of the lack of education combined with the lack of supports and these types of thinking are why the unemployment rate is so high even in qualified individuals, the mental illness rate is so high, the homelessness issues are so prevalent, and the abuse and divorce rates are higher than other groups. Someone who is Autistic would excel at their career if they could get past the social requirements in the interview process and get the sensory and social supports at work. They would be able to keep their depression and anxiety under control if there were supports that took both their mental illnesses and their Autism into consideration, instead of attempting to separate them. They could maintain adequate housing if they could find and keep a job that supported them. They could navigate the tricky world of relationships and avoid being taken advantage of and abused if there were places they could turn where they were treated with respect and consideration.

Instead, as it’s always been, it continues that a few lucky individuals (like myself) find that diamond, that gem of a workplace that gives them what they need to excel. The majority are left to scramble, claw, and fight to get even the smallest bit of consideration. Everywhere they are told they are broken, wrong, at fault. This becomes internalized and unbearable. It is no wonder so many choose to die once and for all rather than to die a bit every day under this pain.

We need to do something to change the tide. We need to recognize that Autistic adults exist, and MUST exist because the Autistic children grow up! We need to see that Autism is a true spectrum of abilities and disabilities and that what worked for one may be horrible for another. We need to put supports in place so that it is an EQUAL playing field for all. It is not that we want better than others. We just want the same chances everyone without Autism get. We must do better! 1 in 55 people is Autistic. I am. My spouse is. All of my children are. My best friends are. Many of my colleagues are. None of us fit the “mold” of the Autistic person. All of us deserve a chance to thrive.

Has Your Shirt Ever Stabbed You?

As insane as this sounds, my shirt has stabbed me, many times. No, I haven’t managed to find a shirt with AI that has gone mad. However, I have sensory integration issues that have made it feel as though my shirt is cutting me.

Things such as lights, noises, and smells can cause serious issues with Autistic individuals. For me, noises and tactile are my two major sensory problems. To me, the smallest of noises can pierce my ears like an ice pick. Someone touching me, particularly unexpectedly, makes me want to jump out of my skin. Selecting clothing to wear each day is not as simple as “how does it look?”. It’s “how does it feel?”. This makes it so hard to pick out an outfit for the day because some days are not bad but others are horribly painful.

Why am I telling you this? Here is why. When you see someone who is freaking out about “nothing”, what do you usually think? Are they drunk? High? Crazy? If it’s a child, do you think “what an annoying brat? Let me give you another perspective. What if that person is panicking because of the searing pain in their eyes or ears? If they have the sensory issue, they aren’t “misbehaving” or “acting silly”. They are in horrendous pain and it’s become too much for them. Don’t believe me? Follow this link, watch this brief video that simulates Autism sensory issues, then come back.

Welcome back! Does this make it more understandable? I can tell you, this is extremely accurate to me. IN fact, I had to lay down after watching this as it overwhelmed me! I had a meltdown that occurred recently that demonstrates it can happen at any time, even to older individuals and even those who don’t seem to have major issues.

It happened at an amazing work event. I was invited to an executive conference and I was so excited and flattered. The first day went (mostly) well with only minor issues that I was able to handle. The second day dawned sunny and warm, and I was in an amazing mood. I’d met many wonderful people and was thoroughly enjoying the various meetings and seminars. I was sitting at a large table at lunch, eating and laughing with tow people I look up to and love being around when it happened. Out of nowhere, from behind, someone began clanging a metal bell with a mallet. I was terribly startled and the pain shot through my ears like a bullet. “You’re fine, you’re fine” I whispered to myself as I tried to meditate and laugh off the worried looks of my companions. Then it happened again…and again…and again. Within a moment, I was curled in a ball on my chair, sobbing, hands over my ears, rocking back and forth and pleading that it would stop. My vision went dim and hazy, all other noises amplified louder and louder, with the sound of the bell cresting above them all. I could feel eyes on me, hear people around me, feel someone touching me. I remember recoiling from the touches and desperately wanting to escape, but our table was in the center and there was no way out for me. I remained, curled in a ball, screaming, until the noise finally stopped. I hid in a corner of the conference hall for an hour, exhausted. The rest of the day was a blur. I missed most of the events. I sat alone. Eventually, I attempted to approach others. Most appeared uncomfortable with my presence so I faded away back to my corner.

This incident was traumatic, to say the least, but it isn’t unusual. Sensory issues are a huge factor in many decisions I make. It’s not just what I decide to wear. It affects when I leave the house, when I work from home versus at the office. I affects whether I accept an invitation out or cancel. It determines what I eat, what I watch or listen to, and even whether I can accept or make phone calls that are not urgent. On a “bad sensory day”, simple tasks like taking a child to school, picking up a gallon of milk, or even bathing become gargantuan tasks that take immense amounts of energy to complete. When bad sensory days come too close together, I become isolated. My anxiety skyrockets and my depression begins to take hold of my mind, twisting it and plunging me into darkness. Sensory issues do not just cause physical pain, but lead to spiraling that can last hours, days, or even weeks.

How can you help? What’s this have to do with you, you may wonder? First of all, many times, it is thoughtlessness that triggers these episodes. Consider the video above. Had the young lady’s father thought about her needs, or anyone else at the event thought of them, rather than brushing them aside or taking away the only things she had to soothe and regulate herself, her meltdown never would have happened. I can personally say, it is very common to have my sensory needs brushed aside as whining, being silly, or trying to get out of responsibilities. This is far from true. After the incident I described above, I was blamed for my meltdown because I should have “warned them” this would happen. I don’t know what exactly may trigger me at any time but it was my fault it happened. (Side note – I did tell them what my general triggers are on the registration form). I also had several people tell me that the noise “annoys everyone” with an air of “you overreacted” surrounding the statement. Even when people are aware you are Autistic and have sensory integration needs, they tend to blow those needs off as unimportant. However, sensory discomfort is the key to so much. My executive functioning, my speech, my ability to work, to perform daily tasks, to function, relies on me not being in agony When I’m in severe sensory pain, I go into fight or flight (usually flight) and can think of nothing more than ending my suffering. How can someone work, learn, think, or interact with others with that in their minds?

Second, if someone is discussing with you their symptoms, or an incident they endured, this indicates they are trusting you. Please do not tell them things like “anyone would be bothered by that”, “isn’t everyone a little Autistic”, or “I don’t like that either but I’m not Autistic”, implying that they aren’t either. First, you shatter their trust and show you are not worthy of it. Second, it negates something they find exceptionally painful and disabling. This is one of the key symptoms of Autism that makes it a disability. You may feel uncomfortable when too many people crowd you or you may startle when someone unexpectedly touches you or cover your ears to a loud noise. You are not disabled by this input and your brain can begin to block it out. Our brains cannot. Do not negate our pain in an attempt to comfort us. We tend to be highly logical and we recognize it is part of our Autism.

Finally, if someone has told you they have certain needs due to sensory issues, please believe them and ensure they are met. These are just as important as the needs of someone with any other disability and make just as much of an impact on us. Just because you cannot see it does not mean it isn’t there or isn’t severe. It wouldn’t be considered a disability if it wasn’t disabling!

Thanks so much for reading and remember, be the truest version of yourself, always!

Double Blame – It’s Always My Fault?

It seems as though when something goes wrong, it is always my fault because I’m Autistic. If I don’t understand the meaning behind what someone says, I am told this is my fault. If someone doesn’t understand me, I am told this is also my fault. Here is a question for you: Why is the onus of responsibility always on the person who is Autistic and why do we need to assign blame? Wouldn’t it be better if we were to try to better understand one another and meet on middle ground?

This is an issue that has occurred often, both in my life and those around me who are Autistic. For instance, I had a meltdown at a conference for work, due to the horrible noise of a clanging bell that was used unexpectedly to get everyone’s attention. The person responsible blamed me for my reaction, stating that it was my responsibility to inform everyone in charge that this could potentially be an issue. I had informed them I was Autistic and had significant tactile and auditory sensitivities. I was even given a room to escape to if things were too much. Also, it isn’t even possible for me to begin to list out every item that may or may not trigger a meltdown. How can someone expect that to happen?

It has become a normal reaction for people to place full blame and responsibility for any needs on the person who has Autism. It is our responsibility to decide what needs we have and it is our problem if those needs are not met, even if it is due to the refusal of those in charge to allow accommodations to meet them. We are often criticized for our struggles with social skills, sensory issues, and memory problems and held responsible for them, despite the fact that they are innate in us, just as being unable to hear is innate in someone who is deaf. One doesn’t hold a person who is deaf responsible for their inability to hear and understand language, so why is someone who is Autistic held responsible and at fault for an inability to understand social cues? They both stem from a difference in the brain, yet one is respected and one is not.

This is something that we need to speak out against. We are not in control of how our symptoms manifest themselves in our brain any more than we are responsible for how our genes manifest our height, our hair color, or our eye color. We are not less deserving of respect for our limits or disabilities than any other person with a challenge. There should be no shame associated with asking for help with communication, sensory needs, or any other associated limiting affect of Autism, yet we all know there is.

We need to change that by speaking up and coming out of the shadows. It is the myths about Autism that hold us back and the lack of understanding about the complexity and variety of Autistic people that continues to keep the myths alive. By being seen, being known, being heard, we can dispel the myths and demonstrate the truth of Autism, both it’s struggles and it’s strengths!