Nothing About Us, Without Us…But Only If You Are Listening. Having an Autistic person present as only a “token” leads to more harmful “help”.
This is a rallying cry for many Autistic individuals currently. “Nothing About Us, Without Us” means if it is for people who are Autistic, it should not be designed without them involved. This is coming up in my life a lot lately and I’ve found a problem. It’s great that we are being involved but it’s pointless if no one is listening or respecting our voices.
I was in a few meetings this week regarding Autism in the workplace and accommodations. In every meeting, every participant was aware that I am Autistic and that I was one of many voices striving to be heard. I was vocal about my feedback and my concerns, as well as my praise and support. However, I left each meeting feeling alone, unheard, and unimportant. The intent of inviting those who are Autistic to work in developing program for Autism was not to make those attendees the “token” Autistic in the room. This has happened to many groups that have suffered marginalization. The last thing I wanted was to be the Autism mascot. I wanted to be a valued participant, sharing my experiences and knowledge, and making a difference. These meetings, however, leave me drained, frustrated, isolated, and saddened. They sometimes even make me question why I bother to do this work. Then, I remember the purpose. THIS is why I do what I do.
I speak out, I reach out, I fight because this needs to stop. Designing a program that is for Autistic individuals that does not involve anyone who is Autistic and able to speak to their experiences and be heard is like designing a pair of prescription glasses without the person’s prescription. You are guessing, based on averages, on anecdotal information found in other prescriptions or on the web, and you might get close. However, you are more likely to make it even harder for the person to see clearly.
In the case of developing supports for adult Autistic people, you are likely going to make a challenging situation even more difficult by increasing negativity towards Autism, spreading myths further that, although disproved are still pervasive, and make it more likely the person will fail. You are doing damage and harm through such programs and it would be better for you to have done nothing than to have implemented them.
We struggle enough due to the responses of people who do not understand Autism and do not need this made worse. By involving and listening to those who are Autistic, you are increasing the likelihood of success for both you and the individuals you are trying to help. By ignoring our voices, our experiences, and our concerns, you are simply doing what the world already does. You are further isolating us, sending us the message that our thoughts and experiences do not matter, and showing everyone that we are not even capable of speaking on our own experiences.
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!
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.
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.
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
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!
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!