My name is Charlotte Marie (RiRi) Quevedo. I am from Seattle, Washington and currently reside in Sultan, WA. I am currently writing a book called "Socially Different" to talk about the struggles my son and I faced with a mysterious disability. During my adulthood years, I found myself questioning my parents frequently about the possibility that I was intellectually inferior to my peers. I couldn't figure out why I was so so good at some things, like singing, but so terrible at others, like understanding that people are not trying to harm me, or knowing even how to eat with a fork, or that I should wear a belt. When I had my son, he resisted being around other people, he only eliminated at home so it was hard to go anywhere, he didn't like any change in his routine. He didn't enjoy playing with us, or with other children, he didn't like his grandparents, and he didn't even let us, his own parents, kiss him or hug him. It was easy to blame vaccines for the problems that we faced, but the deeper I looked, the more I realized why I had been complimented a few years ago on having such a great long term memory. I remember wiping off my dad's kisses all the time and making boys walk in a straight line across the park and turn in a certain direction before they could even kiss me on the cheek. I remember only liking guys if I could approach them on my terms, and when a guy I liked approached me, I would cover my face and turn my back to him. I remember going places with my dad and keeping my face covered, or chewing on the cuff to his jacket I wore. I remember wearing my grandmother's clothes as a high school student and being teased because of it. I remember hiding dish soap bottles for years, because I hated the sight of them. I buy a certain brand of dish soap these days that is easier to view, but I still don't like my husband's hot sauce or mayonnaise containers, and frequently have to get up from the table so that I don't have to see them. I remember spending the majority of my first twenty two years alone, in my room, walking in circles, and I remember my dad laughing because I ran up and down the stairs in circles all my life. I remember being called stuck-up, rude, disrespectful, big head, big nose, "always in her own world," "unique," "living on a space ship." Could it be that I simply carry the traits of an autistic person and just so happened to have an autistic son? When it comes to the social life and the difficulties I have faced, even in interacting with the people closest to me, I would have to stand up with a firm N-O. As I did my research, I learned something valuable that affected me. There are loud autistics, and quiet autistics. I was the quiet autistic, turned loud. I was the quiet baby no one ever seemed to hear from. Throughout my years, I remained quiet, and tried to cope with my sensory problems in quiet ways, such as hiding bottles. But, as I got older, my silence erupted and I began to scream. I bottled up things over a period of time, and suddenly exploded with inappropriate behavior. I didn't like bottles, perhaps, because they reminded me of what was happening to my feelings. When I realized I was autistic, I envied autistics who weren't afraid to tell the world how they felt.
I was diagnosed with asperger's syndrome, my lifelong stigma, and have struggled with obsessive compulsive disorder since early adolescence. I now am battling occasional symptoms of bipolar disorder and mild, paranoid schizophrenia. Somehow I still managed to marry my wonderful husband, Paulino Quevedo, and we had a wonderful child, Paulino Israel Quevedo, who was diagnosed with autism at just 29 months of age.
To add to my differences, I am biracial, half black and half white, my husband is Mexican, and my son, Paulino Israel, of course, is all three! I love to sing, draw, read and write. I'm a great speller and taught myself a wealthy amount of Spanish as a teenager. Paulino Israel enjoys books, music, and the piano. Perhaps his most amazing gift to date is his ability to take phrases from books and put them in proper context with a situation, without us ever having explained the meaning of the phrase. He has said "the day is done" when wanting to leave the swimming pool. He told another child in Spanish, "let me be!," quoting Dr. Seuss' Green Eggs and Ham. He approached a statue of a dog outside of the Children's Museum and said "Are you my mother?" quoting the part of P.D. Eastman's "Are You My Mother?" where the baby bird approaches the dog and asks if the dog is his mother. He gives and receives lots of affection when he is ready. He likes to play a block game where we stack the blocks high, he knocks them down, and we shout, "you dropped my blocks!" He loves listening to stories on CD, and quotes them very precisely. He is a very good eater. His favorite foods are spinach, carrots, brown rice, fruit, rice cakes and salmon. He does not like pizza or macaroni (I wish that were true for me)!
The most difficult part of struggling with autism is that no one seems to care or understand. Your family may think that you should be able to function just as they do, and they may treat you as if you are intellectually inferior if you can't understand how to do basic things, or if you are bothered by something that doesn't bother other people. They may tell you that you lack common sense, when really what you lack is their empathy and realization that the way that you learn is different.
But another struggle is the subject of labeling and being recognized. I was told that I couldn't be autistic because I am a woman, am married, and a mother. I've read that some children were overlooked at one point because they were told "autism does not occur in blacks." I was told that I couldn't be autistic because I care so deeply for my child. I suggest that anyone who thinks that autistic people can't care deeply or feel empathy do a google search on the most common myths of autism. You will find the subject of empathy on all of those lists. While there were plenty of times in my life when I couldn't spontaneously reciprocate the emotions of other people or even spontaneously understand the seriousness of a situation that was unfolding, I have never lacked empathy, and I am a fully capable mother and wife. There are many mothers and wives in this world who have some sort of mental illness or neurological disorder, and the vast majority are undiagnosed. With all the pressure on women to be socially correct and everyone's bias that only men can have autism, you can only expect that most of the so-called "minority" women in this world who have never received a diagnosis would strive hard to try and fit in, and they certainly wouldn't use any shortcoming in their lives to fail their children.
But with no other label giving me a better description, especially not the alternative, rather harsh labels that supposed loved ones have placed on me instead, the only other option for me would be that I am self-centered and lacking common sense, two things that I firmly believe that I am not. But having been a child with autism and perhaps learning how to cope somewhat better as an adult, I don't feel that I have progressed to the point of coming off the spectrum. I am still easily bothered by things that other people aren't, I'm still socially clueless, and I still struggle to keep friendships. I still get along much better with people who are far older who don't remember what to expect of someone my age, or people from different countries who know little about the social expectations of American culture. It takes much more brain power for me to interact with other people, and I will not allow my struggle to be trivialized by people who do not know me as well as I know myself, and have not witnessed all of my difficulties,. Having spent the majority of my first 22 years in my bedroom, no one really knew me or understood me well enough.
For people against labels, just recognize that in your effort to avoid the label, you should not avoid the information provided under that label. You should not accept disrespect from people who do not understand the nature of your disability. You have the right to demand respect for your sensory issues, and anyone who tries to hold you down or downplay your problems without helping you is undeserving of the wonderful things you have to offer the world. Remember, so-called neurotypicals have managed to demand their respect to the fullest degree, so why shouldn't you? You shouldn't feel that you owe anyone anything extra because you have a disability. You only owe it to yourself to get better. Don't allow your label avoidance to become denial that you have a problem. Know that you have a difference, and know that there is help for your differences. If there were a name for everyone's problems and coinciding information, the world would be a better place.
I firmly believe that all autistic people can achieve great things. I firmly stand on the grounds that all autistic people are different, and that when you have seen one, you have seen but one. You have only seen one autistic person, one day, and you don't know what others are like until you get to know them. We can be caring, we can be uncaring, we can be woman or man. We can be tall, short, skinny or obese, black, white, asian, mexican or all in between. We can be nice people, we can be mean, it all depends on our personality. We CAN improve and be better people, despite any lesions on the frontal lobes, because we are not facing a degenerative disease, perhaps a better description would be a progressive disorder. We are first human beings, and all human beings are created capable of doing amazing, unlimited things.What matters most is that we are people, and we deserve respect and empathy. Some autistic children will not learn to respect or empathize unless the people who love them first show respect and empathy to them. I believe that the best treatment and intervention for any autistic person is the empathy, love, understanding and respect of his or her closest loved ones. I realized one day that we may not be able to afford every treatment option out there for our son, and that if we don't have the money, nobody really cares to help us. At one point, I feared I wouldn't be able to afford testing myself for asperger's, but that fear was squashed when I was evaluated for free by a man who believed me, and didn't downplay my concerns. As much as he wanted to fight me, as does everyone when you are trying to get a diagnosis for yourself or your child, he saw that I persistently brought him back to my topic, and that this very behavior could separate me from other people. I realize though, that what matters most is not the test, and it's not the most expensive treatment program. What matters most is giving empathy, even if you've never received it, or haven't received it enough. I look to other moms, and my collection of books by Dr. William Sears on parenting, and my career as a breastfeeding mom (remember, I hate bottles). I realized that the more love and empathy I can show my son, even in my most frustrated moments, the more positive influence I can place on his life, and the more I can heal from the hurt that I did not receive the same level of empathy for my sensory dysfunction, or my difficulty in understanding other people.
And remember, that so often we miss the rain man, because we perhaps look for him in a white male, who rocks from side to side all the time, knows his mathematics, and shows no sense of emotion at all. Try looking for the rain man in yourself, or the little black girl on the corner that no one likes. Perhaps that person who irritates you the most, whom you wish had no excuse...perhaps that person really does have an excuse. Perhaps he is the rain man, or as my husband called me after seeing that movie, "the rain woman." Don't miss the rain man in your life.
