What not to say to an Autistic Person

I’m an Autistic Person, in case you haven’t figured that out by the title. Suffice to say, I’ve heard some pretty ignorant things in my life. When someone tells you that they’re Autistic, don’t be the person that says these things.

#1. “Back in my day, we didn’t have all this Autism stuff.”

• Eugen Bleuler coined the word “autism” in 1908 among severely withdrawn schizophrenic patients.
• In 1943 American child psychiatrist Leo Kanner studied 11 children. The children had features of difficulties in social interactions, difficulty in adapting to changes in routines, good memory, sensitivity to stimuli (especially sound), resistance and allergies to food, good intellectual potential, echolalia or propensity to repeat words of the speaker and difficulties in spontaneous activity.
• In 1944 Hans Asperger, working separately, studied a group of children. His children also resembled Kanner’s descriptions. The children he studied, however, did not have echolalia as a linguistic problem but spoke like grownups. He also mentioned that many of the children were clumsy and different from normal children in terms of fine motor skills.
• Next Bruno Bettelheim studied the effect of three therapy sessions with children who he called autistic. He claimed that the problem in the children was due to coldness of their mothers. He separated the children from their parents. Kanner and Bettelheim both worked towards making hypothesis that showed autistic children had frigid mothers
• Bernard Rimland was a psychologist and parent of a child with autism. He disagreed with Bettelheim. He did not agree that the cause of his son’s autism was due to either his or his wife’s parenting skills. In 1964, Bernard Rimland published, Infantile Autism: The Syndrome and its Implications for a Neural Theory of Behavior.
• Autism came to be better known in the 1970’s. The Erica Foundation started education and therapy for psychotic children in the beginning of the 80s. Many parents still confused autism with mental retardation and psychosis.
• It was in 1980’s that Asperger’s work was translated to English and published and came into knowledge.
• It was in the 1980’s that research on autism gained momentum. It was increasingly believed that parenting had no role in causation of autism and there were neurological disturbances and other genetic ailments like tuberous sclerosis, metabolic disturbances like PKU or chromosomal abnormalities like fragile X syndrome.
• Lorna Wing, along with Christopher Gillberg at BNK (Children’s Neuro-Psychiatric Clinic) in Sweden in the 1980’s found the Wing’s triad of disturbed mutual contact, disturbed mutual communication and limited imagination. In the 1990’s they added another factor making it a square. The factor was limited planning ability.
• Ole Ivar Lovaas studied and furthered behavioural analysis and treatment of children with autism. Lovaas achieved limited success at first with his experimental behaviour analysis. He developed it to target younger children (less than 5 years of age) and implemented treatment at home and increased the intensity (a measurement of the amount of “therapy time”) to about 40 hours weekly. Lovaas wrote Teaching Developmentally Disabled Children: The Me Book in 1981. In 2002, Lovaas wrote, Teaching Individuals With Developmental Delays: Basic Intervention Techniques.

Reviewed by April Cashin-Garbutt, BA Hons (Cantab)

#2. “Autism? Isn’t that for boys? How are you Autistic?”

While Autism is more commonly diagnosed in boys, girls can be Autistic too.

Often many Autistic girls are overlooked because they’re better at masking their symptoms.

#3 “Wait, you’re Autistic? I thought only kids have Autism”

Autistic children become Autistic teenagers. Autistic teenagers become Autistic adults. Autistic adults become Autistic elders.

Autism is a life long condition.

#4 “Don’t worry, he’ll grow out of Autism.”

Once again, you cannot grow out of Autism. Autistic children become Autistic teenagers. Autistic teenagers become Autistic adults. Autistic adults become Autistic elders.

If your child does grow out of it, then they were misdiagnosed.

#5 “Your self diagnosis doesn’t count”

Excuse me? I was diagnosed by a doctor thank you very much. What, do I need to bring some sort of paperwork to prove it to you?

#6 “You must be really high functioning.”

Functioning labels are actually a lot of nonsense and are very hurtful.

Imagine being labeled as low functioning. Because people see you as “low functioning” they see you as a burden, a mistake, a waste of space, etc.

Now, let’s look at the “high functioning” side of things.

When people see you as “High Functioning”, they see you as the “Better Autistic.”

Often, many people are denied accommodations because “they’re high functioning. They shouldn’t need accommodations.”

#7. “Stop calling yourself an Autistic person. You’re a person with Autism.”

First of all, you don’t get to decide what I call myself.

Second of all, many Autistic people, including myself prefer identity first language over person first language.

Calling me a Person with Autism makes it sound like a disease. It also makes it sound like something that can be removed.

#8 “Of course you have Autism. You’re white.”

Excuse me? Racist much? Autism is not just for white people. All races can be Autistic.

#9 “I’m not going to vaccinate my kid. Vaccines cause Autism.”

Listen up. Vaccines do not cause Autism. The widespread fear that vaccines increase risk of autism originated with a 1997 study published by Andrew Wakefield, a British surgeon. The article was published in The Lancet, a prestigious medical journal, suggesting that the measles, mumps, rubella (MMR) vaccine was increasing autism in British children.The paper has since been completely discredited due to serious procedural errors, undisclosed financial conflicts of interest, and ethical violations. Andrew Wakefield lost his medical license and the paper was retracted from The Lancet.Nonetheless, the hypothesis was taken seriously, and several other major studies were conducted. None of them found a link between any vaccine and the likelihood of developing autism.Today, the true causes of autism remain a mystery, but to the discredit of the autism-vaccination link theory, several studies have now identified symptoms of autism in children well before they receive the MMR vaccine. And even more recent research provides evidence that autism develops in utero, well before a baby is born or receives vaccinations.

http://www.publichealth.org/public-awareness/understanding-vaccines/vaccine-myths-debunked/

https://www.cdc.gov/vaccinesafety/concerns/autism.html

http://www.skepticalraptor.com/skepticalraptorblog.php/yes-autism-rate-rising-vaccines-caused-vaccines/
http://www.poison.org/articles/2010-oct/vaccines-do-not-cause-autism
http://www.publichealth.org/public-awareness/understanding-vaccines/vaccine-myths-debunked/
http://justthevax.blogspot.com/2014/03/75-studies-that-show-no-link-between.html

#10 It’s April. You should light it up blue for Auti$m $peak$

No you should not. Auti$m $peak$ is harmful to the Autistic community.

Autism Speaks’ senior leadership fails to include a single autistic person. Unlike non-profits focused on intellectual disability, Down Syndrome, Cerebral Palsy and countless other disabilities, Autism Speaks systematically excludes autistic adults from its board of directors, leadership team and other positions of senior leadership. This exclusion has been the subject of numerous discussions with and eventually protests against Autism Speaks, yet the organization persists in its refusal to allow those it purports to serve into positions of meaningful authority within its ranks. The slogan of the disability rights movement has long been, “Nothing About Us, Without Us.” Almost nine years after its founding, Autism Speaks continues to refuse to abide by this basic tenet of the mainstream disability community.

Autism Speaks has a history of supporting dangerous fringe movements that threaten the lives and safety of both the autism community and the general public. The anti-vaccine sentiments of Autism Speaks’ founders have been well documented in the mainstream media. Several of Autism Speaks’ senior leaders have resigned or been fired after founders Bob and Suzanne Wright overruled Autism Speaks’ scientific leadership in order to advance the discredited idea that autism is the result of vaccinations. Furthermore, Autism Speaks haspromoted the Judge Rotenberg Center, a Massachusetts facility under Department of Justice and FDA investigation for the use of painful electric shock against its students. The Judge Rotenberg Center’s methods have been deemed torture by the United Nations Special Rapporteur on Torture (p. 84) and are currently the subject of efforts by the Massachusetts state government and disability rights advocates to shut the facility down. Despite this, Autism Speaks has allowed the Judge Rotenberg Center to recruit new admissions from families seeking resources at their fundraising walks.

Autism Speaks’ fundraising efforts pull money away from local communities, returning very little funds for the critical investments in services and supports needed by autistic people and our families. Only 4% of funds donated to Autism Speaks are reinvested in services and supports for autistic people and our families. Across the country, local communities have complained that at a time when state budget cutbacks are making investment in local disability services all the more critical, Autism Speaks fundraisers take money away from needed services in their community. In addition, while the majority of Autism Speaks’ funding goes towards research dollars, few of those dollars have gone to the areas of most concern to autistic people and our families–services and supports, particularly for autistics reaching adulthood and aging out of the school system. According to the Department of Health and Human Services’ Inter-Agency Autism Coordinating Committee, only 1% of Autism Speaks’ research budget goes towards research on service quality and less than one-quarter of 1% goes towards research on the needs of autistic adults.

Autism Speaks’ advertising depends on offensive and outdated rhetoric of fear and pity, presenting the lives of autistic people as tragic burdens on our families and society. In its advertising, Autism Speaks has compared being autistic to being kidnapped, dying of a natural disaster, having a fatal disease, and countless other inappropriate analogies. In one of its most prominent fundraising videos, an Autism Speaks executive stated that she had considered placing her child in the car and driving off the George Washington Bridge, going on to say that she did not do so only because she had a normal child as well. Autism Speaks advertisements have cited inaccurate statistics on elevated divorce rates for parents of autistic children and many other falsehoods designed to present the lives of autistic children and adults as little more than tragedies.

Autism Speaks’ only advisory board member on the autism spectrum, John Elder Robison, announced his resignation from the organization this month in protest of the organization comparing autistic people to kidnapping victims and claiming that our families are not living, but merely existing, due to the horror of having autistic people in their lives. In his resignation letter, he discusses his four years spent attempting to reform the organization from the inside without success, stating, “Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

Auti$m $peak$ produced a video called “I am Autism.”

Featured below is a transcript of said video.

“I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.
I know where you live.
And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined
And if you’re happily married, I will make sure that your marriage fails.
Your money will fall into my hands, and I will bankrupt you for my own self-gain.
I don’t sleep, so I make sure you don’t either.
I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain.
You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist — of course, until it’s their child.
I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?
And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.
We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the Eurpoean Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.
We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.
Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?
You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?”

And before you try to deny this, here is the video in question.

#11 “They’re Autistic. They can’t speak for themselves.”

Autistic people can speak for themselves, I’m doing it right now. Verbal communication, is not the only form of communication.

#12 “Oh so you mean he’s ret*rded.”

Transcript: “It’s not acceptable to call me a ni**er.
It’s not acceptable to call me a sp*c.
To call me a chin*.
To call me a fa*.
It’s not acceptable to call me a ki*e.
It’s not acceptable to call me a re*ard, or to call yourself or your friends ret*rded when they do something foolish.
The r word is the same as every minority slur.
Treat it that way, and don’t use it.”
Spread the word to end the word.
http://www.r-word.org”

The R-word is the word ‘retard(ed)’. Why does it hurt? The R-word hurts because it is exclusive. It’s offensive. It’s derogatory. How “retardation” went from a clinical description to a word of derision

When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.

Why “intellectual disability” is replacing “mental retardation”

The R-word, “retard,” is slang for the term mental retardation. Mental retardation was what doctors, psychologists, and other professionals used to describe people with significant intellectual impairment. Today the r-word has become a common word used by society as an insult for someone or something stupid. For example, you might hear someone say, “That is so retarded” or “Don’t be such a retard.” When used in this way, the r-word can apply to anyone or anything, and is not specific to someone with a disability. But, even when the r-word is not said to harm someone with a disability, it is hurtful.Because of this, Special Olympics, Best Buddies and the greater disability community prefers to focus on people and their gifts and accomplishments, and to dispel negative attitudes and stereotypes. As language has evolved, Special Olympics and Best Buddies have updated their official terminology to use standard, people-first language that is more acceptable to constituents.

#13 “But you don’t look Autistic!”

Autism doesn’t have a look.

#14 “You must be really good at math.”

Nope. I suck at math. Every Autistic person is different.

#15 “Wait a minute, I know someone with Autism, and you’re nothing like them so you can’t be Autistic.

If you’ve met one Autistic person then you’ve met one Autistic person. We’re all different.

#16 “Why haven’t you grown out of Autism by now? I’m sick of it.”

One does not simply “grow out of” Autism. Autism is a lifelong condition. You cannot grow out of it.

#17 “Wait a minute, I’ve seen a movie about Autism, and you’re nothing like the character on that movie.”

On screen portrayals of Autism are never any good. They’re full of stereotypes, and misinformation.

If you would like to learn more about Autism, then please get your information from anyone but Auti$m $peak$.