Autism Interview #2: Angela on Autism Advocacy

Autism interview-AngelaAngela is a 38-year-old mother of five (four of whom are on the autism spectrum) and avid musician. She is currently completing her thesis for a Master’s in Data Analytics and works in Customer Quality, dealing with complaints data in a wide variety of ways.

Angela answered several questions about autism advocacy:

What mistakes do autism “advocates” make?

Advocates make a few mistakes, some of which are VERY costly to those of us who have autism. First, they tend to show the most disabling symptoms associated with autism. I feel this leads to misconceptions about the ABILITIES autistic people have. There are a segment of those with autism who suffer from their disorder terribly, due to a lack of ability to communicate with others in a meaningful manner. However, there is a much larger segment of the autistic population who, although they have issues, also have gifts that are not common in those without autism. Those gifts do not seem to be celebrated, so to speak. By portraying all autistic individuals in a negative manner in order to garner support, it leaves many feeling as though we are either not “true” autistics or, worse, leaves people assuming we have equal difficulties and thus cannot work, cannot communicate effectively, and cannot function in society appropriately.

Why are our abilities not celebrated, such as the ability to memorize music simply through playing it a time or two, or remember what was read after only glancing through it? What about the abilities to visualize things perfectly within the mind, as though an artist has painted a gorgeous oil behind one’s eyes, or the uncanny ability to see patterns where others cannot? These are extremely valuable in many different facets of life, and yet no one hears of them.

Another mistake advocates make is to promote the assumption that all autistic people are mentally handicapped as well. Some are. However, this is not a symptom of autism, but rather a co-morbid issue. In fact, most autistic individuals are extremely intelligent, including those without speech. This is particularly true with an Aspie (someone with Asperger’s Syndrome). The typical IQ of an individual with Asperger’s is above 140. This has recently been argued for reasons I cannot understand and there is a move to combine Asperger’s with autism, again made by well-meaning advocates who don’t understand the multifaceted manner in which autism operates. Asperger’s is different and has some differing characteristics, such as early speech, increased likelihood of sounding “formal” or like a “little professor” when speaking, and being very sociable but socially awkward. These differences are lost when they are all lumped together.

My main message for these advocates is to remember that autistic people exhibit a broad range of abilities and disabilities and that when all that is seen are the most disabling cases, it harms those who are less disabled on the spectrum by building false impressions of autism.

How have you had to advocate for yourself?

I have to advocate for myself almost every day, in every setting. I have had issues in school, on the job, with friends, and with family. Unfortunately not all of them have come out well.

First, in my extended family, most are not aware I am autistic. In fact, there has been a movement to hide this from my family by my mother. My father is not even aware I have it. My mother will acknowledge it occasionally, when it benefits her. She is understanding of how autism hinders the lives of her grandchildren, but will not give me that same leeway. For example, if I’m misreading a situation, a person, etc., she will not excuse me. If my sensory issues are causing major problems, I am told to “deal with it.” There has been no extended family support for my disabilities, but much condemnation for mistakes or issues that have arisen through life on account of the disabilities.

In my immediate family, there is much more understanding and total acceptance. If I’m having a “bad sensory” day, everyone understands. The lighting, the clothing, other sensory issues are understood and not held against me. If a social situation arises, there are cues given to redirect me. This is extremely helpful because they are not given in a condemning manner, but rather as a hint. I have requested these. If done without request, it may have been offensive, but I have asked for them.

I have quit jobs due to people not only misunderstanding autism, but using it to mistreat me, be it through talking down to me or even taunting. Now that I’ve acquired higher education and, thus, more professional jobs, this is becoming less and less of an issue. I still have to pull a manager aside and explain it though. However, my more recent professional jobs are much more understanding and accommodating.

I have had an IEP at both the Bachelor and Master’s level of education. I had one Master’s professor who refused to acknowledge this and fought against it the entire semester. I had to go to Disabilities Services as well as my adviser to address it. I wish I could say he came around and recognized he couldn’t “cure” me of this, but that didn’t occur.

There was another incident that occurred in my undergraduate that really caused some issues for me. One afternoon, a girl next to me was talking away whilst we were working on assignments, and the professor, becoming agitated at this, came from behind me and slammed her hand on the table next to the girl and told her to stop. This may seem fairly harmless, except the girl saw her coming, but I did not have any idea she was even there. This led to a horrible meltdown, resulting in me running from the classroom and sitting, curled in a corner of the disability services office for an hour crying and shaking. I am very sensitive to noise and to people suddenly being in my space that I do not expect and am not close to. She apologized for startling me, but at the same time, did not understand the issue and appeared to think it a bit ridiculous for someone to “overreact” like that. Unfortunately, that is a common response: being told it is an “overreaction.”

As for advocating with friends, I am direct and upfront in the beginning, telling people that I cannot read faces, voices, and body language well, so I need them to be direct with me. If they are angry, for example, they must tell me I’ve upset them. However, as of yet, no one has respected that need and I have lost every friend I’ve ever made. Currently, I have only family that I am close to. All my friendships have ended due to my “ignoring” what they are feeling and not “picking up” on their feelings. Although I directly told them I was unable to and reiterated this often, they refused to be direct with me and, instead, chose to end the friendships. One, in particular, complained she’d been depressed to the point of suicide and that I never even noticed. I honestly had no idea because she sounded fine from what she was saying. She said she often “looked sad” and I didn’t “care.” This last experience caused scars for me as well because I have since been feeling perhaps I cannot have friends because they do not want to be honest with me and simply tell me how they feel.

Do you have any advice for parents or caregivers of autistic children?

That one is easy. Do not ignore your child’s symptoms. If she cannot stand certain fabrics, stop forcing her to wear them because you like how they look. Stop trying to make them “normal.” It will never, ever happen, and they grow up feeling like less of a person and feeling like they can never be accepted because even their own parents won’t accept them. Finally, although you acknowledge their issues, do NOT parent based on them. If a behavior is unacceptable, it is unacceptable, whether they are autistic or not. I did a large study on this in college. Parenting in response to symptoms leads to lower functioning and lower family functioning levels. A great personal example is with my son. He has a fear of ceiling fans. In his bedroom, he has one but it is never turned on. However, we do not allow him to insist that all fans, everywhere be turned off. I’ve had other parents of autistic children claim this is “mean.” I disagree. What is mean is teaching your child that they can alter all of their world based on their issues, instead of learning coping skills. The real world is not like that and phobias and irrational fears of children can be dealt with, but not if you let them control everything.

There was a family that participated in the study who, because the autistic child hated red, would not allow anyone in the family to have anything red or reddish. This included his sister, whose favorite color was red. The sister hated her brother and her mom for this, among other reasons, because she learned her wants and desires didn’t matter if they overlapped his. This is a horrible, harmful thing to do to an autistic child because it limits their ability to eventually function in society. You can slowly acclimate them to things. I did it to myself and I’ve had to do it to my children and they DO learn to do it. I also understand doing it to try to avoid meltdowns, which are scary and loud and embarrassing, as well as frustrating, but you have to think, long term, about what’s best. It is NOT best for them to think the world will alter things to suit them.

Is there anything else you would like to say to readers of this blog?

Please stop seeing autism as one particular way. We are widely different from one another. If you know one person with autism, you know one person. Understand we are people with feelings too. Do NOT tell your children not to play with a child who is acting “odd” because they may have autism; it breaks their heart, and their parent’s heart. We hear you. We know what you said, and, frequently, your child will rat you out.

Learn the benefits of autism and not just the disabilities. We have unique gifts to offer!

Finally, please just be open and honest with us. I want a friend, very badly. I don’t have any and it’s because, in part, no one wants to bother with my disabilities. I keep friends as long as they remain just basic, not too close, friends. Once they become close, they don’t want to mess with having to tell me they are upset or anything because it means actually having to own up to their emotions and discuss them. It’s not fair to expect me to be like you. I can’t be.

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