When choosing holiday decorations stay away from stimulating colors such as reds, oranges, and yellows. When everything else in the world is stimulating and overwhelming you will want to be able to go home to a sensory-friendly safe zone. Blues, deep purples, creams, greys, dusty pinks, and other soothing colors are good choices to help reduce stimulation for Autistics during the holiday season.
In the movie A Nightmare on Elm Street, Wes Craven chose red and green for Freddy Krueger’s sweater because he had read in Scientific American that red and green are difficult for humans to perceive at the same time. This is due to green being a calming color and red being a stimulating color. Wes Craven used this to his advantage by dressing Mr. Krueger in his signature red and green sweater in order to induce discomfort in audiences so it enhanced the perception of anxiety and fear when Freddy Kreuger was on screen. You may be asking what the heck does that have to do with the holiday season, right? Well, the two colors that are associated with winter holidays the most are red and green. When we are exposed to these colors, whether or not it is in a horror movie, we still have a difficult time processing green, a calming color, and red, a stimulating color, at the same time and it increases our anxiety and discomfort during the holiday season. To help diminish the anxiety associated with the holidays ban red and green combinations from your holiday decorations at home. This also goes for other stimulating/calming color combinations such as red and blue, yellow and blue, orange and green, yellow and green, and other similar conflicting color combinations. Mix relaxing colors with each other such as grey and dusty blue or choose monochromatic decorations in a calming color.
Skip the metallics! We all love tinsel and glitter. We love the mirrors under candles and the sparkling table runners. Unfortunately, our nervous systems think otherwise. Shiny metallic decorations can increase stimulation, as do mirror ornaments, and other reflective decorations. The sensory experience they provide and the light they reflect can be disorienting and lead to overstimulation and rumbling. We may not even realize that may be the culprit of our stressed-out mood. Try skipping the shiny stuff in your holiday home decorating and you may see your anxiety go down.
Be super picky about the lights you choose to use on your tree or windows! Forget about the super bright LED’s. No Autistic needs bright blue/white light keeping them up all winter long. That defeats the purpose of winter! Instead, stay with lights that complement your calmer decoration colors. Once again you will want to stay away from contrasting colors so if you have a green tree shy away from red lights. However, oddly, red lights in and of themselves are not stimulating. It’s actually quite the opposite. Red lights won’t stimulate the brain at night and disrupt sleep patterns. Red lights are a good choice for around windows where light may shine into a bedroom window possibly keeping people awake. Good colors for trees are golden, clear, blue, and green lights all the same color or even intermixed with purple, orb style lights that give the tree more of a glow are also a good choice. Multicolor lights can add to increased stimulation when mixed with the colors of other ornaments and it may be wise to avoid them. Also, consider forgoing chasing or dancing lights.
Don’t stress about decorating your entire house. The point of decorating is for you to celebrate as you see appropriate. If all you want is a tree with clear lights then by all means just have a tree with clear lights! If all you desire to put up for the holidays is a wreath on your front door and nothing more then go for it! The point is to lessen your meltdown potential during the holiday season by making it a sensory-friendly haven for you. It’s all up to you and what your unique Autistic nervous system can handle.
Rise in Autism rates. Autism Epidemic. Autism Boom. Spike in Autism. No matter how you phrase it the question is the same. We have many theories but no one seems to agree. However, sometimes the answer is so simple and obvious it’s mind boggling and so I step forward to posit an answer to the question, “What is causing the increasing rates of Autism?” I put forth that the internet is a major factor that answers why we have been seeing an increase in Autism Rates over the last 20 years.
Since the beginning the internet has connected people. After all, that is what it was made to do! It went from simple information exchange to the leviathan it is today. Social media connects nearly everyone on the planet including Autistics and Autistics connect via the web just like everyone else and just like everyone else Autistics have found it to be a boon to their community. One that didn’t exist in pre-internet times. One we are protective of and cherish.
Before January 1, 1983, the birth of the internet, and the subsequent invention of social media Autistic people depended on the same modes of communication that everyone else did. The spoken or written word and anyone can correctly guess how that went for us! As the dawn of the internet communication revolution progressed little by little Autistics, like the rest of humanity, have become connected via the internet.
Autistic people now have a tool, the internet, of juggernaut proportions and it has led to the increase in Autism rates. The use of the internet by Autistic people gave the Autistic community a way to simply meet. Something that was more difficult to do in pre-internet days.
One way the world wide web has fostered our growth is recognition. We see others like us now and we connect. We realize we are Autistic too and seek out a diagnosis. One must also take into account that parents and families will see Autistic tendencies in children and each other and pursue an Autism diagnosis for their loved ones. This is all thanks to the internet where before we may not have known others like us existed at all. Internet access has increased recognition and therefore DX’s of Autism have gone up.
A stimulating aspect of the Autism boom, is that the internet has fostered, to be blunt… sex and reproduction. Prior to the mainstream internet we were either not aware of each other, or were under watchful eye. Both can cause issues with meeting and having sex. Now we have a way to connect and don’t fool yourself. Autistics even use hook up apps such as Tinder. These meetings have led to romances, interludes, and marriages. Just as it’s helped non Autistic communities improve their sex lives.
Another way the internet has affected Autistic mating is observation and comfort. We can now get to know people prior to meeting. We can process and analyse, as we do, potential sexual partners. This increases comfort when finally meeting and the subsequent relationship that follows. Not all internet friends turn out to be intimate partners but it’s safe to say they the internet has quelled some of the anxiety that comes with seeking a sexual partner. As a result, birth rates between Autistics have gone up. We are seeing more Autistic people because Autistic people are having Autistic babies.
As mentioned before the internet has helped form an Autistic community. Now we aren’t afraid to go out and seek a DX or even come out self DX’d, when we realize that we are Autistic! We know there is no shame in our community and we are protective of our own. Instead of hiding in the shadows and masking a life that is not true to us we can go forth and say “I think I’m Autistic” or “I’m Autistic” and I need a diagnosis. Autists aren’t alone anymore and people feel better about seeking a diagnosis because of the community the internet has allowed to form. We have a cushion to land on when we get that final word that we are Autistic. It has emboldened people!
It seems overly simplistic when you think about it. However Occam’s Razor says the simplest answer is the best one. The internet gives us a platform in which recognition of each other, reproduction and romance, community, and comfort has increased the rates of Autism in the world. Do you know what? It’s a good thing!
I hear and read comments on IQ all over the internet that range from prideful (I have an IQ of 150!) to the defensive (You just think your smarter me.) to very disrespectful (You’re just stupid!) to blunt logical truth (You know your IQ doesn’t make you better, right?). The comments go on and on and things can get pretty tense between those with differing opinions. As someone with a higher IQ I want to set the record straight with this humorous anecdote on how completely unintelligent I can be but first a little background!
I am a late DX Autistic woman who was given an IQ test during my assessment. They do this to rule out intellectual disability that may be mimicking Autism. I was okay with that as it makes logical sense to rule things out that may be a differential diagnosis. During my ASD evaluation, I discovered that IQ is on a spectrum as well! My IQ at the time was 113-122 giving me a median IQ “score” of 118.
It was explained to me that IQ can change in a person from circumstance to circumstance and it’s completely subjective. Since I had taken the IQ test during the Christmas Season (major stress), recently melted down from sensory overstimulation that the Holiday Season brings, and didn’t sleep the night before I possibly could improve the score if I were in a more optimal situation. (I have not attempted to do this and don’t intend to do this just for ego-boosting reasons if I am given one again for DX purposes, so be it!) However, I was also told that if I were put in a more stressful situation then I may score much lower. From that I know for a fact that IQ is never static.
Now, in the recent past, my whole house (dogs, husband, and myself) had Norovirus. During this time in order to keep hydrated, I had gotten a bottle of Gatorade. When I was finished with the Gatorade I refilled the bottle with Mio and water and drank it. Refilled it and put it in the refrigerator to chill. I was being a responsible patient and doing what I needed to do, no problem, right? Wrong.
I forgot about that water because my ADHD causes me to forget about everything and went on about my Autistic existence. A few weeks later I’m throwing up more than a puppy with motion sickness on a roller coaster. I ended up at Urgent Care on an IV and sent home with a pocket full of anti-nausea meds so I stopped throwing up. It was very worrisome as I had been fighting a UTI in the previous month.
I got home and popped into a chat room to let some online friends know how I was and it dawned on me as I was talking to a medical professional in the group. I had drunk the water in the fridge on a particularly hot day after I had run out of ice. It was chilled and I didn’t think anything of it and I drank it mainly because I wasn’t thinking. I cringed! It was far, far from an intelligent thing to do but it made perfect sense as I was the only one to be reinfected in the house!
I, of high average to superior intelligence, had given myself the worst case of vomiting to the point of dehydration with the full knowledge that the bottle of water was contaminated. I felt completely helpless and surprised I could even keep myself alive but I had simply forgotten because while my IQ may be impressive my section scores revealed more.
My first section, Verbal Comprehension, was 114-125 which is Superior. I accredit my desire to communicate effectively on my high vocabulary and knowledge of what words mean. The second score I received was on Perceptual Reasoning was 104-117 which is High Average which probably is common in those that have a high pattern recognition in Autism. Now the bump in the road that took those two amazing scores down was my Working Memory which came in at a towering 83-96. This was the kink in the hose, the wrench in the machine, my Achilles Tendon. My working memory was Low Average. I take twice as long to learn something than my peer group.
My ADHD prevented me from getting a higher score and that was in a quiet office with no distractions. If I had taken the IQ test at a food court in a busy mall my scores could be drastically lower simply because of the overstimulation that would undoubtedly occur. My answers may be sound and intelligent but my response time and inability to ignore the surrounding noises due to Sensory Processing Disorder would make me seem like there wasn’t anyone home. Not to mention my ability to get the information out in an order way would be negatively affected.
Remember, that ditzy blonde that you make fun of could be a brainiac that can shame you under the table when it comes to “intelligence” and it’s only her ADHD that gets in the way. If you put her and you in a different environment you could easily be calling her boss. However, there may be a guy that doesn’t have much education or knowledge but his memory and ability to retain information on one topic could easily lead to the same outcome. That brilliant composer may be at a 10th grade reading level. You never know!
In a nutshell, IQ means little in the bigger picture, as long as you treat everyone with dignity and respect you are succeeding more than you will ever realize! It’s a hard thing to admit that I didn’t live up to my IQ but it needs to be said so people know the truth about what makes people intelligent and what doesn’t, like my attention span and memory!
Today, I am compelled to the keyboard with a heavy heart. We once again have “mercy killing in the name of love”. A mother, to use the term loosely, killed her son because she was stressed and overwhelmed by his Autism. In the past years, there have been increased news reports of parents killing their Autistic children. Why?
Now I’m not one to simply say it’s just an increase in occurrence, just like I’m not one to believe that “compassion murders” haven’t happened before now. They always have happened but the reported frequency has been increasing in recent years. I would like to say this is because we have more awareness of this insidious behavior but the responses that have always been the same from the ableist, typical, non-disability crowd have proved otherwise. That is overwhelming compassion for the murder(s) because they had it hard as a parent or caregiver. Nevermind the fact that the disabled person is the victim of abled egoism and homicide! Oh, think of the horror to perish at the hands of the only person you trust on the planet! The general public romanticizes unsolicited mercy killings, but at what cost?
In a very tongue in cheek way, I am going to say it’s my Autistic Empathy that reasons that when a person engages in consenting acts of sex with the intent to reproduce, the lack of concern if they are to conceive offspring because they feel that they are ready to be parents or even just accepting you are pregnant and choose to keep the pregnancy, you enter a covenant with the child/ren that you have conceived (or adopted in some cases). It’s an eternal agreement with nature and whatever higher power you may believe in, whether moral, ethical, the universe, or religion, that you help that child thrive. In times where the child is born disabled, it’s a covenant that we all should honor until we leave this Earth.
We have an entire section of society that frowns on terminating viable pregnancies even if there is a disability found prior to birth, however, this pro-life outrage is often absent in the wake of a mercy killing. If one is not for terminating a pregnancy on the basis that it is still a human why are we okay with killing a postnatal 10-year-old with a disability? The answer is simple and can be explained with the boiled frog metaphor.
A “Cliff Note Explanation” for those who did not click the link! There is a myth, or fable if you prefer, that if you put a frog into a pot of hot water then that frog will jump, fight, and try to flee for its life but you put a frog in a pot of frog friendly tempered water and gradually heat it up the frog will allow itself to be cooked to death.
This is exactly what is happening with society in regard to mercy killings! We relate and feel bad for the first one we heard that made national news, often it’s a romantic expose on a husband that killed his wife “out of love” and not being able “to see her suffer”. The next one, well, it’s not as bad as the first or it may be worse than the first, either way, you reason, they were under stress as well and people act out of character under stress. You understand how someone would kill an adult child that was afflicted such as theirs was. The disabled adult is in a better place now. Soon, we learn of another carer snapping under duress and murdering a loved one, a child, and we feel for them, relate, empathize. You reason that the other two were acceptable and so this is as well. You can see yourself in their position and your heart aches for them, that they had to make that decision.
Years, go by and we keep hearing of these heart wrenching decisions. All of the abled society deems it necessary that these are acceptable murders that should be forgiven. You’re consider yourself pro-life and against abortion and assisted suicide but thoughts turn to the disabled in your own family. The last time you attended a March for *Insert Hypocritical Cause Here* or convention your Autistic child made it impossible to be there. They were clearly in extreme distress and you just “can’t watch them suffer anymore”. Instead of doing what is rational and logical in the name of love which is adapting to them being in your life by adjusting your lifestyle to enable them to thrive, your mind turns to murder for mercy. You’re a martyr in your plight and God and society would understand! You focus on your perception of quality life, you don’t consider that this person, this human that loves you and trusts you to cherish them and help them live may not even perceive themselves as in need of death to escape. All they know is that when you enter the room their heart soars.
I will end this entry there because without saying the people that have allowed themselves to be peer pressured into seeing the murder of the disabled as acceptable are incorrigible monsters. We may have a disability but at least we aren’t morally inept.
Until Death Do Us Part may we all join hands and enable each and every human to survive regardless of life circumstances.
Most would agree that the Autistic Meltdown is the most notorious symptom related to Autism. An Autistic Meltdown is when the Autistic Nervous System reacts to being overwhelmed by environmental stimulation. These can range from external reasons (such as bright light) to internal ones (such as panic when plans change abruptly). Often this reaction manifests in an apparent display of intense feelings. Passion, Rage, or Overly Silly and Giggly. Meltdowns manifest in many ways. Which makes sense because humans overall are creatures with feelings and our emotions lead to their display. As with NeuroTypicals, the NeuroDivergent comes in a plethora of variations.
When Melting Down the Autistic Nervous System is being overstimulated and is interpreting that overstimulation as pain. It will do whatever it can in order to stop that pain. This is where Extreme Stimming comes into play.
During an intense Autistic Meltdown, Autistics both young, old, male, and female may engage in Extreme Stims commonly referred to as Self Injurious Behavior (SIB). I prefer the term Extreme Stim because the stimming isn’t intended to cause injury or harm. It’s meant to flip the figurative kill switch and bring you out of fight or flight mode. When Melting Down the Autistic Nervous System is being overstimulated and is interpreting that overstimulation as pain. It will do whatever it can in order to stop that pain. This is where Extreme Stimming comes into play.
I’ll explain but first I’m going to explain it to you in a smaller, more understandable, and way more relatable, way. I’ll use baseball as a life reference.
Baseball in and of itself is a painful experience and I’m pretty sure most people were unreasonably forced to play baseball (or some form of sports that included a ball in school). When you or someone else was hit by the ball either you’d instinctively rub the area or your gym teacher or another kid would tell you to rub the injury and rubbing where the ball hit would surprisingly help the pain even though it makes no sense at all, or does it?
In a nutshell when you get hit by a ball the signal that you were hit by the ball travels up the nervous system to your brain. The brain sends signals back and produces pain. When you gently stimulate the injury by rubbing, shaking, or “walking it off” it sends a signal up the same nerves and interrupts the nervous system process and signals from the pain and this helps make it feel better.
The same thing goes for the nervous system pain during an Autistic Meltdown. As I said before during a Meltdown the Autistic Nervous System interprets overstimulation as pain and reacted as though it’s on fire. It panics and senses impending doom. (I’m not being overly dramatic this is how an Autistic Meltdown feels psychologically and you can’t control it at will, you just go along with it because you have no choice!) In response, the nervous system does the only universally wide instinctive thing that we all share. It seeks out and applies stimulation that will stop that pain. Since the nervous system is on fire and in panic it seeks out stimuli that are more extreme than the environmental assault the Autistic Person is going through. Head hitting, screaming, rocking, head banging, pulling hair, stabbing oneself, etc. are all ways that this can be done. These extreme stims help calm the nervous system by stopping the pain with alternative simulation very much like rubbing an injury.
Extreme Stims also provide enough stimulation that activates the Endorphin System which is the body’s natural pain killer. There are many studies on Endorphins and Autism including evidence that Autistic’s naturally have Endorphin Deficiencies. Which would explain why our nervous systems panic in the first place! That’s for another article though.
If you, or someone you know, experience Extreme Stims that are dangerous, potentially dangerous, or life-threatening you can learn replacement activities that will produce the same neurological reaction when applied when you are still in the rumbling stage and still maintain control over yourself. Replacement Stims may or may not prevent or lessen a Meltdown overall. If you have the opportunity please consult an Occupational Therapist or other Expert in Sensory Input.
You will want to focus on things that get your endorphins flowing. I have had luck with running and sprinting. (If you do take your stimming outdoors make sure you take a sedative that will calm you but not put you to sleep just in case you do sense a loss of control approaching while out but it’s even better if you have someone with you. I suggest both. These are precautions in case you encounter negative attention.) Throwing soft objects. Rocking. Pounding my legs with my fists (up to hard enough to bruise but not so hard as to cause swelling). Vigorously shaking my hands. Pacing. Sex. Jumping and coming down with force. Slapping a firm surface with an open palm. Applying pressure to my temporal nerve until uncomfortable. Hot shower. Basically, anything that may overwhelm the environmental overstimulation and produce Endorphins with little to no injury is the best. If you can match it up with the type of sensory input you crave, even better! Do this from the beginning of rumbling and throughout the Meltdown. I wish you luck!
What causes Autism? It’s the question of the millennium in many communities. From simply curious Autistics to the pro cure (eugenics) crowd the question is ever present. Why is this so important? Because many of us believe that we are just a natural variation of human DNA and therefore are normal in our own right. Meaning, we don’t need a cure but the only way to prove that is to find out why Autism happens. I’m going to explore one of my theories in this post that I believe may be an element to unlocking the mystery of why Autistics exist.
The first thing most of us learn in life is that coincidence, correlation, and causation do not need to coexist and there are a slew of variables, X factor’s, if you will, that we may not know about. Yes, Autism can show up around the time the first vaccinations are administered yet Autism can also show up before vaccinations, after vaccinations, or in children who never have been vaccinated. Study after study has disproven the Autism Vaccination Myth and if that isn’t enough to convince you the fact that the doctor that made this claim retracted everything should. We can dismiss this and should. So what, you may ask, if not vaccinations?
There is an observation that I have made that may explain Autism and it’s increased prevalence in our modern times and that’s modern times in and of itself. We see a study increase in Autism with the continuously growing population and the more technicalogically advanced we become as a society. I believe that this is happening as a natural reaction within humans due to overstimulation and lack of sensory input that we used to be accustomed to.
The increase in the human population has left us with increasingly less and less individual room. We have a decrease in personal space with every birth, housing unit going up, resqued life, recovered illness out space decreases. Micro units and homes are becoming an ideal in many over populated cities because we have run out of space for us to comfortably have our own homes as we did in decades past. As a result we aren’t able to take times away to process and decompress our bodies and relieve the Neurological irritation that overpopulation comes with. This may have an effect on the Neurological System causing an over response in an attempt to protect itself. It’s a reaction to the perceived threat.
In genetics we see generational fears appear in familial units. There was an experiment with rats where they conditioned rats to fear the smell of Cherry Blossoms by associating the scent with electrical shock. The rats then became fearful of the scent as it now represented pain to them. When the scientists bread the rats the adult offspring were scared of the smell of Cherry Blossoms despite the fact they had no prior experience with the scent. This is a good indicator that neurological reactions to any overstimilation may be passed down the generations.
When we have all these phobias converge into one Neurological System it can cause genetically based general adaptation diversities and Autistic tendencies. Since Autism is a Spectrum with many unique and varied aspects we may have some humans not present with any Autistic traits until the genetic line is triggered by things such as overpopulation, lack of personal space, noise, and any other triggers that may be an issue to that specific genetic line.
When humanity’s population started rapidly increasing as it has in Earth’s recent history more genetic lines have been being prompted to react. This would explain Autistic familial units as well as the unexpected Autistic child/children being born into Neurotypical families. However with the increase in population there also comes an increase in technology in order to serve more humans efficiently.
The advancement of technology often results in a reduction in humans having their sensory needs met. When it comes to history humans have had to till, plant, harvest, chop, boil, smell, feel, and experience the sensory that comes with life. Even an introvert that did not do these things would experience a richer sensory environment than one does now.
We used to walk to a library while being out where birds chirped, wind blew, and the sun warmed you. Then browsing the nice neat stacks and rows of books. Pulling them out of place and feeling the book. Opening it and hearing the spine protesting as you spread the pages. The smell of the book and the neat lines of script that would cause stories to dance in your head as you found escape. But now, even the most book wormish of humans do not always get the rich sensory experience that we did a half a century ago.
Many humans do not go to the library but read digital books on their computer, phone, or tablet. While technology comes with it’s boons it also lacks the sensory input that humans need to cope with the reduction in alone time and the crowding with increased population.
For example if there was an Autistic in a crowded metropolitan area a century ago he or she may have completely flown under the radar because they had the sensory input that balanced out the overstimulation. If you took the same Autistic and put them into modern day America they may be more Autistic because of the reduction in sensory needs being met and the increased overstimulation from the surrounding environment.
Keep in mind reduction in sensory and lack of area for personal use isn’t the only issue. We now have digital technology. We have beeps, blips, digital noises, the everpresent electrical hum, LED’s, blue light from everything, the list just goes on and on. Even when outdoors we are connected to artificial stimulation that is constantly bombarding our brains.
We may be seeing an increase and a boom in Autism occurrences because the life humans have created for themselves is bringing about the protective genetic reaction that is programmed into their DNA. It was always there, it’s normal, natural. It’s a step in human adaptation that is a response to the progression of mankind. Not everyone has the genetic possibility of Neurodiversity but that doesn’t mean that we aren’t normal we are just a fragment of the vast spectrum that is the human species.
However, this is only one of my theories I have entertained regarding the in’s and outs of the causes of Autism. I think there may be something to it.
I apologize for taking so long to get this second part out about the Sensory rooms! I have been valiantly battling a horrid Kidney Infection. Illness can have a greater effect on Autistic’s because the sensory stimulation from pain, fever, etc. and it can overwhelm the system and make them less like themselves than if, for example, a Neurotypical had the same level of illness. In an eggshell, a scratch can feel like a gaping wound. That is not what this article is about though!
This is the second article on Adult Sensory rooms! Last time we talked about picking colors that were soothing to our particular nervous systems needs. No two people are alike and therefore no two Autistics are alike. As a result, all of us are in different living arrangements. Some of you live with family, some of us rent, some of us own our own home.
If you are blessed to own your own home and you have a spare room or area to turn into a sensory area you are lucky! You don’t need your appeal for accommodation to be met or approved by anyone but yourself and/or your spouse. For the rest of us, we have Parents and Landlords to respect. If you live with parents, or other family members, sit down and speak to them about what is available as a sensory area. As for this article, I am focusing on what to do if you are renting an apartment because my husband and I live in an apartment.
Since my husband and I live in an apartment we can’t do much as far as changing the structure of a room without physical needs such as a wheelchair but we can do plenty as far as changing the aesthetic of the room to create a relaxing sensory room or a place to de-escalate a meltdown. In order to do this, we need to ask the landlord for some Reasonable Disability Accommodations/Modifications.
List everything you need to do to make your area more accommodating because it all needs to go in a letter!
The first thing we need to do is decide what we need to do to make the area calming and make a list. Keep in mind these are requests to do these and cover them out of your own pocket of they are modifications and accommodations are at the expense of the landlord from what I understand. Do you want a different paint than what came with the apartment so it’s more soothing? My husband and I would like to do the area in Greys. Would you like to have a light fixture switched from a florescent bulb to a LED so you don’t get a headache? (The landlord should cover an expense like this but if he doesn’t make sure you can cover the cost of an electrician and/or fixture in case they won’t cover it or let you have maintenance help you switch it out.) Do you need to have noise restrictions loosened in case of a meltdown so a complaint doesn’t get you kicked out? Put that on the list too! If you desire a different mode of communication aside from speaking on the phone or in-person then that should be included as well. List everything you need to do to make your area more accommodating because it all needs to go in a letter! It’s easier to make a list to take with you to write a letter than going back and forth and trying to remember what you need. This way you don’t miss anything.
Now from what I understand requests don’t need to be in letter form and can be made and granted in person with an oral agreement. However, life has taught me that paper trails are an Autistics best friend. It is always good to get things in writing to protect yourself in the future. If for some reason problems arise you need to be able to defend yourself. Having a letter of request and a letter granting the request is a good way to do this. (First, call your housing management and ask if they have specific forms they would prefer you to use before writing a letter so you don’t run into frustration having to backtrack and do it over with their forms.) You can send this by email if it’s to an official email address that is linked to the Apartments Management if that is not an option make sure you send it certified snail mail with a signature request so you can prove they received it. Anything in which you can prove that you sent it will work. (If you have official forms from your Landlord then copy those before and after you fill them out. Before so in case you mess up you have spares, after so you have a record.)
It’s understandable that you may not want to disclose that your Autistic to your Landlord due to the risk of discrimination so you may want to use an umbrella term to describe your accommodation needs. When I spoke to the property management company that owns my building I used the term Neurological Condition and Sensory Processing Disorder. You may also use the term Asperger’s is you so choose. Asperger’s is trendy and, sadly, it may be more accepted than straight-up Autism. I understand that Asperger’s has controversial origins and I agree with filtering the term out of Autism discourse however this isn’t the time to make an issue of that. You will have plenty of time to educate everyone once you have gotten to know them better. We are focusing on requesting accommodations in a way that you feel safe and secure. (Keep in mind if you do say Autistic then you are still covered against discrimination but this is about your sense of well being.)
I wrote a Sample Accommodation/Modification Request Letter however there are probably far better examples on the internet than I am able to provide, please, feel free to look them up. You may want to request in the letter that they respond in writing as well whether an email or a return letter in the mail.
When you have written your letter print two, one for your records, and the other to take it into your Doctor or other Health Care Professional and ask them to write a letter confirming and verifying your request. This is your letter of support that you will be turning into your landlord with your letter or request forms. Your medical professionals do not need to disclose any medical information that is not part of the request so, if you need to paint in a calming color that isn’t as bright to your eyes as white, that is what they need to focus on. What they do not need is information about things that do not pertain to the request. So if you are, for example, HIV positive or Diabetic the Management doesn’t need to be informed if your requests do not to pertain to these conditions. HIPPA does matter! Your privacy matters.
Make a certified copy of the Doctor’s letter (a notary public can do this, many banks have them for free) or have him write two copies so you have a copy for your own records with his signature (it’s always good to have backups). If you are mailing it then put the letter/forms, signed with a pen, put it, and a copy (duplicate or notarized copy) of your Doctor’s letter in a business-size envelope. Fill it out like your normally would and take it to the Post Office. Tell them you need to send it Certified Mail with a Signature on Delivery. Keep any receipts as proof and so you can track it.
If you are sending an email then scan the letter or forms into your computer. (I do not doubt you know this however sometimes I get overwhelmed to the point I do not think of the trees in the forest and I just see the problem. I am simplifying for ease for those that read this in a time of high stress and require a higher level of support.) Write your request letter in the email. Attach the scan of the Doctor’s Letter. Send. Make sure you don’t delete your sent mail so you can prove that you did in fact send it.
Keep in mind you shouldn’t start on any accommodations or modifications until you have the go-ahead from your Landlord. If in a letter or email save it for your records. In case there is reason to believe that the Landlord will contact you by phone to grant permission or deny your request then put a call recorder app on your phone if it doesn’t come with one pre-loaded. That way you still have proof of permission or denial. As I said I’m a big fan of evidence trails!
*If you do not live in the United States such as a US territory or another country then check with the local authority on regulations for disabled renters.
Like all Autistics, I have never fit in. Ever. I can fake it pretty well but something is missing that prevents me from bonding with others. A few hangouts or dates and they usually bail leaving me in the wake of “What the hell did I do this time?” I knew it wasn’t me as I always intended the best for everyone, I tried so hard to click. It never worked with females (the term was chosen because it doesn’t denote solely those assigned female at birth) but I was better at being friends with males. Which, as a married woman, complicates things. So I just remain lonely and for the most part friendless.
I have separate Medical/Psych records that note my lack of eye contact, reduced facial expression, and several other Autistic tells that no one was able to hear. If Autism Speaks why then did no one hear it for 37 or so years. Simply it’s due to people not wanting to hear it. I even walked 2 miles to the ER to try to get help for what I assumed was PTSD and was told that I was the problem. I have some strong words for that but I’ll not mention them. I tried to tell them that I was about to have an episode in which I would not be able to prevent myself from hitting my head. Still. Nothing.
In 2017 I joined forces with my Husband and his Nephew who was itching to start an online Church. We were sick of the crap that was getting pumped out into the World after Trump was crowned King and we decided to fight the good fight. I was chosen as the face because, well, I’m attractive compared to them I guess. About 4 sermons into the formation of said Congregation I started to have a huge, monumentally huge, panic attack. I had one person watching at the time and I knew who it was. I was prepared. I was safe. Medicated for Anxiety. By all means, I was not in a position to have a panic attack from PTSD. This isn’t my Modus Operandi. I felt sheer dread, I was rumbling and about to Meltdown. The next weekend I couldn’t even turn on the computer. I was experiencing a Shutdown, a term I wouldn’t be familiar with for some time. Something was up that was far beyond anything that could be Therapized out of me and I was certain I knew what was going on. I had realized that I had had Meltdowns before.
That week I told my Therapist what had been going on and asked her something I had suspected since 2010. My nephew is Autistic and I think I’m Autistic as well, what do you think?
Her reply was, “I have noticed some things but if you are you can’t be very Autistic. Just a little bit, if anything. Do you know Sheldon from The Big Bang Theory?”
Me, “Of course that’s my favorite show! I’m not as social as him though. I don’t even have as many friends as he does.”
Therapist, “Exactly, he wouldn’t be either if he was Autistic in real life. He’d never be married or have that many friends.”
My awesomeness, “Do you know who could assess me?!”
I left with Sheldon wouldn’t be as functional and neither would you but she agreed that I should be assessed.
The search for someone to diagnose me was in my hands because it’s incredibly difficult to find someone that will do an adult Dx and I hate talking on the phone, so, naturally! They make it as hard as possible for those whose parents didn’t bother to look into why their kid was weird! The lack of consideration and respect for me as an Autistic was front and center. Thankfully my IQ is high so I was able to find someone in an efficient timeframe. (Anyway, that is what a Psych would tell me.)
I found a place that would take my insurance and assessed adults. It was a Godsend having the entire bill covered through our insurance and I feel so blessed because of that. Seriously, that never happens! But my state passed a law that increased the accessibility of Autism services to those who needed them. So I made an appointment.
(Please note that if I had not been awarded SSI and been put on Medicaid I would not have been able to afford the 850.00 bill for the assessment even with my husband’s insurance. I’m not privileged, I’m disabled.)
It was in the middle of the Christmas season in 2017 that my first half of a 4-hour assessment was scheduled. When we got there I spilled my coffee and felt horrible.
She looked at me and said “Most of the time when someone your age comes in looking for an Autism diagnosis it’s because they have a family member that was diagnosed and/or they have done extensive research themselves and already know that they are Autistic. Tell me why you suspect you are Autistic.”
I let it all out. I walk on my toes! The notes in several medical files that say I can’t make eye contact. The times I have tried again and again to make friends. My laughing at (it was really with but I didn’t know she wasn’t laughing) a friend in pain. I didn’t know she was in pain. To me, it sounded like she was doubled over in laughter. I still cringe over this!
Fun Fact: In the middle of my assessment my Doctor looked at my husband and said that she thinks he needs to be assessed next. A year later he received his Autism Dx!
I relayed to my assessing Psych how I would misread faces. To me, someone suppressing laughter and someone being angry, at times, can look the same. There’s the embarrassment when people walk away mid-sentence or conversation because I took too long to process the information and produce an answer. I was insanely quiet. Always assumed to be shy. (Once you get to know me though you can’t get me to shut up!) The one that took it though was that I didn’t speak until I was four. Four! Again, I ask, how was this missed!
After the first session, I was exhausted. It was Christmas and Christmas is hard on me when it comes to overstimulation. I melted down that night because of the 2 hours of assessment and all the Christmas cheer that was forced onto my nervous system in Walmart. I almost canceled the whole thing out of doubt but I went back for my second session anyway.
I wanted to hide, the coffee stain was still there, I obsessed about it. This time she ran me through a battery of puzzles, simple math equations, memory exercises, and other tests. I found out that if I don’t have to think about the mathematical formulations that I can make an educated guess and guess the solution accurately. I have incredible lingual abilities which were probably learned out of the desperate need to communicate effectively. (It didn’t work. Being more proficient with words just makes people think I’m a snob and know it all. I’m not. I just want to connect.) I was able to logically deduce people’s state of mind even though I can’t intuitively pick up on things. (Ex: Crossed arms means someone is guarded, mad, or cold and I can analyze and extrapolate information from clues. Not always correctly.)
When I came back for the results she told me Autism was exactly what was going on! Oh! I was so happy but I didn’t show it because I don’t show my empathy outwardly as much as Neurotypicals even though I have plenty of empathy for people. I have a great IQ, which is what the second session was about. She explained that the IQ test was simply to rule out any other conditions that may give the appearance of Autism such as an intellectual disability, which I did not have, I was quite intelligent. I am a bit slower at learning but I also retain more information and in the long run can learn things better and more accurately than others therefore can carry out a job more completely and satisfactorily in comparison to my NT peers. (Even if it’s annoyingly accurate because I have problems deviating from what I’m taught and what I’m used to.)
In the end, I was given a Level 1 Autism diagnosis which used to be called Asperger’s. It gave me answers upon answers. Look no one wants to hit their head it’s messed up but I had a reason as to why I hit my head. Why is this?
It was because I was Autistic. I am okay with that.
Imagine you’re a Bull, a happy, well mannered Bull. One day the Rancher comes out to lead you to a trailer. You don’t know where you are going but he’s the Rancher and you don’t really have a choice so you happily go along. You go to a place you’ve never been before, you’ve heard it called it a Rodeo!
You are placed in a pen by the Rancher and tended to by people you don’t know. You may recognize a face or two but for the most part you’ve never been around these people. Their faces are difficult to make out, you don’t know them. Strange place. Strange people. Then someone comes and puts a band around your midsection, painfully tight, squeezing. It feels as if someone slipped burrs under the fabric. You squirm. It’s extremely uncomfortable. Suddenly. It gets loud!
You can hear cheering! It’s a crowd and the sound is deafening, disorienting. They are laughing and pointing at you. Not long after a Clown appears running around taunting you, laughing in your face. His visage is painted in bright contrasting colors and you can’t tell if he is a good Clown or a bad Clown. You become distressed. What is happening?!
It’s hot and you’re panicking and you try to get away! You try to alert the people near you but they don’t understand. They don’t speak your language and you don’t speak theirs. You try to communicate your needs but fail trying. No one is going to help you! You look around you for an escape. You’re frantic, the tension is building up within! A feeling of impending doom wells up from inside you.
Your fight or flight takes over. It’s all instinct now!
Suddenly, to your horror a man gets on your back and you break. Your fight or flight takes over. It’s all instinct now! You’re terrified!
You try to escape the horror of what is happening to you! You buck and spin to try to stop the onslaught of the painful sensory stimuli. Instead of freeing you and leading you to safety, the man on your back digs spurs into your sides inflicting more discomfort and more suffering. All you want to do is escape! Get away!
Your entire focus now is to flee the area and find relief! Your nervous system takes over and you are no longer in control of your body. You are compelled to react by the force of survival, the need to escape certain death. Against your will you buck, spin, jump, run in a frenzied effort to dislodge the man on your back to escape the dreadful anguish you have find yourself enduring. Against your will you accidentally injure yourself! You didn’t mean to hurt yourself but you did. It hurts but you can’t stop! You have to free yourself! It’s a nightmare that seems to last for eternity…
Except. You aren’t a Bull. You are a Human. An Autistic. You may be a child, adult, male, female, trans, intersex, young, old, middle aged, with high or low support needs. You might be an islander, black, white, middle eastern, or a mix of everything. You might be independent with a job or living with your family. You may even reside in a group home. The “Rancher” isn’t a rancher at all but instead they may be a parent, partner, guardian, friend, cop, teacher. Anyone you know. Anyone you trust.
The “Rodeo” is simply a place where there are people you do not know, do not know very well or trust much. A Doctor’s office, a School field trip to the Zoo, the Dentist, a Mall, the Park or even simply Work. It may even be your own home and people are visiting unexpectedly or maintenance is working in your apartment.
You started out the day okay enough yet something’s off. Your clothes get tight, uncomfortably snug almost painful. The feeling of them is tight and you squirm attempting to relieve some of the pressure. You’re burning. Hot. You want to remove your clothes but it’s not acceptable to do that here and now. Somehow a pebble got into your shoe and you can’t do anything about it. The pebble digs in and rubs your skin raw. That’s all you can focus on. The pebble keeps getting bigger and bigger. Your foot aches, then your leg. Then, suddenly it’s loud, you hear everything!
The buzz of the electricity overhead. No, it’s all around you! The chorus of human voices surrounding you. A roar of incoherent voices in a never ending clamor. The clinking of metal, pens writing, humans scratching, sniffling noses, the gurgling drinking fountain. Someone laughing loudly. Too loudly. Were they laughing at you? You can’t tell. Is that man furiously mad at someone or is he exuberantly happy, why? Is the woman at the desk upset? Is she frowning at you? Your own heartbeat and breathing sound thunderous. It’s all so disorienting and you don’t know exactly where you are in location to an exit. You don’t know how to leave or if you can leave!
You hear some people singing Happy Birthday and then applause. Someone points at you, smiling. He’s saying something but you can’t focus. You become distressed. You try to explain what’s going on but he doesn’t understand what you are trying to tell him. You clamor for his attention again to ask for help but you can’t comprehend what he’s saying. He holds out… what? Cake?! You can’t put an answer together. You panic! No one understands what is about to happen. A wild energy rises up internally. A build up of anxiety in a reaction to the situation around you. It all is about to come out!
You try to get out but you can’t. You are met with obstacles, people, chairs. Lights get bright, blinding you! Like a bat trying to escape a noisy room the assault on your auditory throws your balance off. You bump into things. Your mind racing, you feel a sense of impending doom enveloping you. The assault on your nervous system is anguishing. You bolt!
Sensory overload is coming in from all directions inflicting more and more and more. All you want to do is escape!
Instinctively. Your entire focus now is to find relief any possible way you can. Your nervous system takes over and you are no longer in control of your body. Very much the same way that the body forces you to breathe when holding your breath underwater. You are compelled to react by the force of survival in an audacious move to escape a fate worse than death! Like a seizure you have no agency over yourself. And it’s terrifying!
Your nervous system is stuck in fight or flight. You can only react. You yell, scream, pull your hair, stomp your feet, throw things! All your efforts are sensory needs seeking to be met. Searching out input and stimulation to bring harmony back to your internal anatomy. You’re desperate, crying! You are stuck in an eternity of frenzied horror and can’t escape. Panic! You’re dreadfully helpless as you watch your body do what it needs to in order to stop itself from reacting to the overstimulation of your environment. You can’t stop it.
A tenacious impulse comes on. One you try desperately to ignore, you tell yourself to keep yourself together but you are helplessly subjected to nature and to instinct. It’s overwhelming! Impossible to overlook! You don’t want to do harm to your body but you unintentionally injure yourself as you hit your head with your fists, bang your head against a wall. All against your will. It’s your Nervous System.
Finally it stops! A wave of relief washes over you. You feel yourself calming. Your heartbeat slows. You cry. The noise level is more bearable. The energy that had been in control of your body is waning. Compliant, your Nervous System has balanced itself and has handed the agency of your being back over to you. The headbanging and extreme stimming worked even though it was not your choice. You’re exhausted and all you want to do is quench your thirst. Sit in a hot shower. Then climb into bed. You can’t fully communicate yet. You write down enough to tell someone to get you out of there and that you need to go home. You’re free!
You don’t know what impact this NeurologicalEvent, commonly referred to as a Meltdown, will have on your friendships, job, social standing, and life in general. It’s happened before and it will happen again. The fallout won’t be good. At best, it will just be something that happened! As it should be. You just have to pick up the pieces later. For now your focus is self care. Your needs are very basic.
You get home. Assess your injuries. Tend to your wounds. Hydrate, maybe eat something simple. You take a warm bath or hot shower and calmly stim. Your spouse, friend, mom, dad, maybe all of these people, help. For some of us maybe no people help because you know you’re safe now and you just want to be alone, at peace. You crawl into bed and you shut down.
Once again you were on full display at a Rodeo. A fearful bull bucking in pain. Now you are just a person with an Autistic Neurology that has an unquenchable craving to rest, to sleep.