Nothing About Us, Without Us…But Only If You Are Listening

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.

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!

Double Blame – It’s Always My Fault?

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

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

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

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

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