Ableism and Invisibility

I will be honest. My frustration is growing. The amount of mistreatment, ableism, and judgment many around the world, including myself, have been facing is growing. There is a widespread combination of factors that seem to be encouraging this. The first is ableism, which, in relation to Autism, is discrimination against Autistic individuals, favoring those who are not Autistic as “normal” and “superior” to those who are. This attitude devalues those who are autistic and limits their potential. Examples of ableism in autism are assigning negative stereotypes to all autistic individuals, denying an autistic person’s abilities because it is assumed they cannot do something due to not being “normal”, parents mourning about how they are being held back, disabled, or otherwise severely negatively impacted by not having a “normal” child. It is anything that sends the message that being Autistic is not “okay” or not “good enough”. Talking about the negative impact someone’s care has on society is ableism because it says that the person has no value of their own and is only a cost. Doing things to Autistic children that are “not okay” for “normal” children is an example of ableism. If you would never imagine saying or doing something for or to a “normal” child, it should not be done to an autistic child either. Using “Autistic” as a slur or a joke about someone who is socially awkward or behaving in what you determine to be an “Autistic” way is ableism. Defending it by saying things like “it’s not a big deal”, “I’ve always talked that way – it’s too hard to change” are defending ableism. Some personal ones I’ve dealt with are being told I am not struggling because I do not ‘look’ autistic. Being instructed that my child’s meltdown that was caused in the grocery store by the rude behavior of someone else is my fault because I’m a bad parent. Being told that, because I’m not physically disabled, I don’t “deserve” any help. Having parents tell their kids not to be friends with mine because [fill in the blank with any negative autism stereotype]. Being told that if I cared, I could “fix” or “cure” myself and my children. Being told I cannot possibly raise kids if I’m autistic. My son being continually bullied by staff at his school because they insist he “really needs” their “help” (he does not). My daughter repeatedly having to be tested by the school for Autism because girls “don’t have autism”. Losing a job after they find out I’m autistic because I am not “capable” of doing the job (I had done it successfully, including winning awards, for several years. All that changed was they found out). I could go on for a long time on this but here’s a simple way to tell. Replace whatever is being said or done with gender or race and see if it is acceptable. For instance, if a business said they don’t want to hire someone who is female because they are too much trouble and can’t work as well as someone who isn’t female, would this be acceptable? Of course not! However, this is commonly stated about autistic people and everyone seems fine with that.

The second issue is, rather than truly fostering inclusion, most are looking for inclusion so long as we are invisible. They will tout all the work they support in their schools, workplaces, and communities to foster inclusion of Autistic individuals. However, as soon as they have to personally interact with someone who is autistic, they flip out. Some examples here are not wanting the autistic woman on your team at work, not wanting your child paired with the autistic boy on a group project, encouraging your teen girl to find a “normal” boyfriend when you find out her current one is autistic, complaining about the thought of autistic kids being in the same classroom with your child because your child will learn less and be distracted by having someone “different” in their room. Many of these statements will begin with a phrase like “I’m all for inclusion but…”. You are all for inclusion as long as you don’t have to see us, as long as we remain invisible to you.

These two issues are a huge reason why so many people who are autistic give up trying to be a part of society. So many give up trying to keep a job because, despite being more than capable, and, in some instances, even more capable than most people, no one ever sees their talents and automatically assumes they can’t rather than they can. This is why so many autistic kids seclude themselves more and more as they get older because it is assumed they cannot have normal relationships and friendships. It is assumed they don’t want friends, they always want to be alone, etc. This is why so many stop trying to join afterschool activities or go along with work outings. I cannot tell you the number of times people (well meaning at times) don’t even invite me along on outings because they assume for me that I cannot handle it. Rather, I hear about get togethers, parties, and outings as everyone else is chatting about how much fun it was. Rather than allow me to decide what I can and cannot handle, it is assumed I cannot handle it. Additionally, many times autistic people are not asked because there is a thought it will be too much trouble or that they will act in a strange way and embarrass everyone. This is just furthering the stereotype that autistic people don’t know how to act in society.

Is it any wonder autistic people report staggeringly high rates of loneliness and isolation? Is it any wonder autistic people suffer higher levels of depression than any other group? Is it really surprising that many eventually give up and go on disability because, no matter what education, degree, or training they have, they will never be thought of as capable? Is it really shocking that the suicide rate is astronomically high?

Think of it this way instead: people would rather risk killing their child than having one that is autistic. Anti-vaccine people who believe that vaccines can cause autism would much rather have a dead child than an autistic one.

Think of this: people use fad diets, dangerous and unproven treatments, and degrading therapies to try to remove their child’s autism. Many of these end up in lifelong physical or psychological harm, degrade and dehumanize their child, or even cause death. They are fine with this on the off chance it will “fix” their child.

The only messages this sends to those of us who are autistic is that we will never be good enough to be accepted, we will never be loved unconditionally because we are not “fixable”, we will never be included because it’s too risky or too much trouble, and we will never be considered capable or skilled because we aren’t “normal”.

As you interact with autistic people, be they your children, kids in the neighborhood, someone at your workplace, or a random person in the store, before you judge, before you assume, stop and think. Would what you are saying, doing, or thinking be acceptable if you were saying, doing or thinking it about one of your traits, such as your gender or race? Would you be okay with someone judging you with those same types of thoughts? I guarantee the answer is no.

Remember this: We are NOT a broken version of you. We are our own unique version of humanity and have just as much of a right to be included and respect as you do.

Reframing is Life Saving

This is an amazing example of reframing – looking at things from a different perspective that doesn’t automatically assume negative causes such as seeking attention or mental issues. For an Autistic person, this can literally be life saving.

Imagine that, as a young child, your needs were labeled as ‘attention seeking’, ‘inappropriate’, or ‘psychotic’. Your need for love? ‘Psychotic and inappropriate’. You cry because you got hurt? ‘Attention seeking’. You need a nap because you are exhausted? The other people aren’t and that is ‘inappropriate’. You would grow up believing you should not take care of yourself because it is selfish and inappropriate. You will not seek appropriate love and boundaries. You will not seek medical help for illness or injury or mental health problems. You will feel you do not deserve these things and your feelings about your worth will plummet. As life goes on, a lack of self care and care for illness/injury will lead to physical pain that becomes constant. A lack of love, support, and mental health care will lead to depression and anxiety spiraling out of control. Life will continue to drown you until, out of sheer desperation, you try to take your own life because you literally cannot hurt anymore. This is reality for so many Autistics who are judged harshly for being ‘not normal’ and who are forced into therapies to make them like everyone else. It ignores their needs entirely, labeling them as inappropriate or wrong. In my mind, this is not much different from conversion therapy. You use psychological means to try to make a gay person straight. You use similar means to make an Autistic neurotypical, sending the message they are not good as they truly are. We know how how harmful gay conversion therapy is and it’s outlawed in many states. The APA has spoken against it. Yet ABA and other therapies doing the same to Autistic children are not only allowed they are touted for how well they ‘work’. Yet, just as with conversion therapy, adulthood proves it doesn’t. Psychological illness is astronomical in Autistic adults. We have the highest suicide rates. We have a life expectancy of only 55 years. The behaviors that were ‘extinguished’? They are back. They were never gone. They were masked, hidden.

The issue here isn’t Autistic people. It’s the parents and doctors who want a ‘normal’ child, no matter the cost long term. They view Autism as a disease, a problem, just as homosexuality was viewed. It is an integral part of who they are; they are born Autistic and no amount of therapy will ever change that.

What needs to happen is acceptance. Acceptance of who they are, who they will become, and respect for their needs and differences and abilities. Until this happens, we will continue to suffer and die at alarming rates.

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.

Autism Isn’t Fatal But Lack Of Acceptance Can Be

In order to ensure those with sensitive dispositions or previous trauma are not upset, I am starting this blog with a trigger warning. This blog discusses the astronomically high rates of depression, anxiety, and suicide in Autistic individuals. Please do not read if this is a trigger for you!

For almost as long as Autism has been a diagnosis, doctors and scientists have believed Autistic people do not suffer from depression and are not at risk for dying by suicide due to a lack of social awareness and theory of mind. This led to years of lack of support. Coupled with a lack of acceptance, forced masking and abuse, the rate of Autistics who die by suicide has become terrifying.

Look at those in your life who are Autistic. They have a current life expectancy of 54 years. Why?! Autism isn’t fatal. There’s no disease that Autism brings to a person. The reason is suicide. In general, Autistic people are 5 times more likely to die by suicide than any other group in the general population. The higher the individual’s intelligence and lack of intellectual disabilities, the higher the risk. The highest risk person in the world to die by suicide is….

An Autistic female with no intellectual disabilities and an average to high IQ.

Unlike other populations, Autistic people have a very high attempt to completion rate and use violent means regardless of gender. However, death by gun is low in Autistics. However, the methods used are just as fatal.

I am one of those who failed. Over my teen years through my forties, I made several attempts. I’m glad now that I failed, but it’s led to a passion for making the world better for Autistic people. Through the research, I’ve also begun to reach out to keep my children alive. What led me, and so many others, to attempt to end our lives? Research and personal experiences may have the keys.

In a word, acceptance. A lack of acceptance, lack of support and respect, and a lack of understanding of Autistic people and their uniqueness contribute to a person feeling devalued, alone, misunderstood, and hopeless. Furthermore, research is now showing many of the traditional treatments for depression, anxiety, and suicidal behavior can actually make things worse for Autistics. I have personally found this to be true. Traditional therapy only serves to trigger my tendency to perseverate and pushes my focus negative by repeatedly discussing past and current traumas. The advice to step away, focus on my thoughts have led to spiraling anxiety and depression.

Additionally, social isolation and bullying create a horrible storm in the lives of Autistic people. Children who are Autistic are bullied at astronomically high rates. 60% have been bullied over several years by other children and adults. Constant bullying like this leads to severe anxiety and PTSD but it’s frequently ignored as them ‘just being Autistic’ or, in those with higher intellectual capacity, they are actually blamed for the bullying and pushed to ‘just act normal ‘. This spiral continues into adulthood where years of faking, pretending, and being mistreated take their toll.

Science is finally paying attention. However, despite knowing the harm that masking, ignoring co-morbidity with depression and anxiety, mistreatment, and harmful therapies are causing, there is a continued lack of acceptance and refusal to change.

We need to speak out for our lives, the lives of our kids. If people would accept that their way isn’t the only way, that neurodiversity brings so many benefits, that we are perfect as we are, even though we are different, we could save lives.

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!

Why Am I Here?

I am here so that my voice can be heard. There is so much out there about what Autism is, what it feels like, and what should be done. It’s coming from a good place, but usually doesn’t come from those who truly know – those with Autism.

I’m sharing my journey about life, love, work, and parenting with Autism in my world. If you have questions, feel free to get in touch!