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.

The Words Hurt His Mind

The Words Hurt His Mind

One of my children had testing today for school to re-evaluate his Autism. For those who are unaware, this is the testing they make the kids go through every 3 years to demonstrate they still have Autism. Allow that to sink in for a moment. Although it is widely known and accepted that Autism is lifelong, it is part of neurological development, and it will not simply disappear, the schools in this country force these children, from aged 3 through graduation, to undergo a long series of tiring, frustrating, and monotonous testing every 3 years, just in case they can remove their IEP assistance because the school deems them not Autistic anymore. This has zero to do with medical diagnosis and, in fact, no medical or psychiatric provider for the child is involved. This is extremely challenging and stressful for the child, difficult to manage for the parent, and a waste of time and resources, yet is required for your child to get even the smallest of accommodations, such as testing in a private room or extra time during exams.

This testing involves 4 different parts: speech and language, psychological, educational, and social history. It requires a LOT of time and effort on the part of the child and the parent to do. My son (who has provided consent for me to share this in the hopes that it will change) is currently 16 and undergoing testing, again. He expressed extreme frustration to me and to the tester when I dropped him off for his first 3 hour segment of testing. He firmly informed the tester that he saw this as “silly” because he is and always will be Autistic. Her response was that it was required so there was no choice (we are doing it because it has always been done this way type of responses annoy me!).

Not even half-way into the testing, my phone rang. Although it was from my son’s phone, the tester was on the other side of the call. She informed me that she was concerned for his mental state and that I needed to come and get him immediately. I arrived at the school five minutes later and could instantly tell he was in shut-down mode. (Shut down, for those who don’t know, is similar to a melt down, without the crying and lower levels of fear.) He was pale, looking at the floor, responding very little, but in a flat manner. I sent him to the car (no worries, air was on!) and spoke to the tester. She told me he began becoming highly anxious shortly after testing began. She moved him to the sensory room and continued. He began attempting to refuse to continue, stating he was struggling and couldn’t understand, but she pressed him to continue. He then began having what she deemed “hallucinations” and became extremely agitated. She eventually ended the testing and called me.

His side of things is very different. He worked on the testing until they got to the portion where they test short term memory. (Note that this is a common area where Autistic people struggle). He stated she told him he had to repeat a series of numbers after her which got progressively longer. He began to stumble and become very upset and anxious as he knew he wasn’t doing “well”. She moved on to having him remember a series of objects, some of which were things he classified as “weapons”, which caused him further anxiety. He said she was talking too fast and he couldn’t understand what she was saying. He told her he could not go on as he was becoming very upset but he stated he was told he had to keep going. He stated things blurred together and he started seeing disturbing things in his mind (imagination – he commonly escapes into his mind when troubled). He told her he knew they were thoughts but it was his brain’s way of saying it was too much. She still forced him to continue until he completely shut down. He was visibly distressed when I arrived and begged me not to make him do the testing. He said they “don’t listen” to him when he says it’s too much and that he knows he is “failing” the tests.

My first problem (out of many), is that they ignored a person’s insistence that they needed to stop and couldn’t continue. Regardless of the age of the person, they need to respect their limits. Due to this lack of respect for his limitations, he is now still suffering the effects several hours later. His day is over, essentially, as he will not have the strength to do anything else other than hide out in a quiet, dark place, rocking and stimming to try to recenter. He won’t be going to the pool as he had planned. He won’t be enjoying the sunshine riding his bike. He will be in recovery for at least the rest of the day. This was unnecessary and points to a huge issue Autistic people, particularly children, face. Many people ignore the limits and needs of those with Autism, just as they ignore their strengths and talents.

Second, this testing was presented as a pass/fail testing, which is clearly is not. This adds significant stress. This is due to Autism being viewed through a medical model, and not a social or human rights model. Because it is viewed medically in a non-medical setting, it is “normal” or “abnormal”, “pass” or “fail”. This puts extreme pressure on the Autistic to try to pretend and mask because they don’t want to “fail”. If they do too good of a job, they inadvertently test themselves out of any type of assistance. If they do too poorly a job, they test themselves into stricter and more limiting accommodations than they need. Either way, they end up burnt out, exhausted, stressed, and anxious. The worst part is that it is all unnecessary. First, the person should be tested against themselves, not some theoretical “norm”. This “norm” changes frequently so, just because you fall within the “norm” now does not mean you will in 5 years. All the testing that was done on him 10 years ago is worthless now because the norm shifted. Second, they need to do this in a manner that is not “normal”/”abnormal” or “pass”/”fail”. They already stress kids enough with standardized testing and then they add this on kids who are already vulnerable to anxiety. He should have gone in and been reassured by the testers (as he was by his mom) that this is just to see how he’s doing and that he should only do what he knows and is comfortable with. That isn’t what happened. He was put under extreme pressure and became increasingly anxious when he began to “fail”.

This must stop. This is not only happening to Autistic people. Did you know, if you are deaf, you will have to undergo this same testing to make sure you are still needing services because you are still deaf? The same applies for any disability or difference. If you need any type of accommodation at all, you will undergo this constant scrutiny to see if you have crossed the line enough into “normal” so that they do not have to help you anymore. Autism is life long and all this testing is doing is causing meltdowns, shut downs, stress, anxiety, and wasting resources. If they were Autistic 3 years ago, they still are now. We have tons of IEP meetings, discussions, teacher conferences, and constantly update goals, needs, and objectives. This testing is completely unnecessary. I have to go through a social history every time. My pregnancy with him still hasn’t changed. His parents still haven’t changed. If there were major life events, they already are well aware of them. If there are relationship issues, either they already know or it’s none of their business. Why do I have to spend 2 to 3 hours every 3 years to tell them the exact same things? The social history is actually sometimes used to deny Autistic assistance under the assumption the challenges come from stress at home or toxic environments, both ideas which have been soundly disproved. The educational system still holds on to the thought that Autism symptoms may be due to poor parenting or bad home life, which is why they try to scrutinize your family history again and again.

Thank you for listening to me vent. I am going to see if I can find a way to help him climb out of the darkness and fear that he was shoved into today. Stay safe and remember to be YOU!

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!