Journeys with Autism

I’ve been going through an especially hard time lately. I’ve been feeling very dispirited, sad, angry, abandoned, and lost. I have days in which I cry virtually all day long. And then, I have days like today, in which I feel more grounded and more focused. Perhaps it’s simply that I got a full night’s sleep last night—the first full night’s sleep I’ve gotten in months. For the past few months, I’ve been waking up at 3:45 am, and then I have trouble falling asleep again. It doesn’t matter what time I go to bed; I wake up at the same time. If I manage to fall asleep again, I have disturbing dreams that are so vivid that I don’t even realize I’m dreaming until I wake up.

A friend of mine asked whether I’m having an extended meltdown—an interesting question. I don’t think I’m having a meltdown, at least not in the usual sense. If what is happening to me is a meltdown, it’s the combined result of all the years of driving myself, all the years of finding no kindness or understanding, all the years of trying so desperately to be what I cannot be, all the years of hating myself for not being what I cannot be. If I’m having a meltdown, it’s the result of all the stressors I’ve battled against throughout my life.

But really, what I’m going through feels more like extended grieving. And perhaps that’s all a meltdown really is: an explosion of grief over the pain of overload, the pain of being alone, the pain of being invisible, the pain of living in a world that is hard to bear.

There are many layers to this kind of grief, and the one I’m focusing on now is the grief of realizing that being autistic means being a member of a hugely misunderstood and maligned minority. I used to think I’d already traversed that territory by virtue of being a Jew, but the experience I’m having now is quite different from anything I’ve encountered in the past. True, I have experienced anti-Semitism, up close and personal, and I’ve met more than my fair share of people who think that they understand Jews because they’ve read the Bible or had a Jewish friend once. I still see plenty of anti-Semitism out there in the world, but for the most part, it doesn’t feel personal. Most people who know I’m Jewish don’t see me as a caricature. They don’t rely on stereotypes when thinking about me. Until recently, I lived my life as a very visible Jew—first wearing a kippah and tzitzis everywhere I went, and then later, wearing a headscarf and long skirts. If someone were going to engage in anti-Semitic craziness, I would have known about it by now. It just hasn’t happened. 

The experience of being autistic feels very different. Now that my autism diagnosis is on the table, and I’m making changes to integrate it into the life of my family, I feel like a walking stereotype. People in Bob’s family who have known me for years say things that are completely at odds with their experience of me—that is, when they’re not ignoring me altogether. All that has changed is that I have a diagnosis of autism. That’s all. When people got upset about Bob cancelling his trip, he got responses like the following:

• Does Rachel have as much empathy for you as you have for her?
• Often, it’s the caretaker who suffers more than the patient.
• You should put Rachel first, but not at the exclusion of your own children.
• If Rachel could do everything on her own before, why can’t she now?

If instead of receiving an Asperger’s diagnosis last November, I’d had a stroke and needed to relearn everything—how to go grocery shopping, how to be out in the world without becoming disoriented, how to speak without exhausting myself, how to reconstruct my self-image, how to reconfigure my life so that it works—I sincerely doubt that anyone would have questioned my ability to empathize, accused me of taking up too much of my husband’s time, or challenged me about whether I had actually lost the ability to do simple tasks. In fact, people would have been asking about how they could help.

However, I have a diagnosis of autism, and that makes me suspect. It means that instead of writing and offering supportive words, my relatives pull back and offer almost no direct support. Apart from the email I received from one of Bob’s cousins, the great shining exception to this pattern is my 93-year-old father-in-law. He is very interested in what I write on my blog and talks to me on the phone with great appreciation and affection. Perhaps it’s because we share so much in common. We were once both very high-functioning people out there in the world, seemingly in control of things, and making a Great Success Of It All. Now, he is very frail and can’t possibly do what he was able to do even five years ago. He has had to find new ways to see himself and to enjoy the world. Despite differences in age and neurology, we are going through parallel experiences, and somehow, we’ve been able to extend ourselves to each other.

Within the family, though, he is the exception. When I consider the range of responses I’ve gotten, from silence to anger to suspicion, I find myself realizing that I have now joined the ranks of the invisible, the misunderstood, the maligned, and the burdensome. This time, it’s personal. This time, it’s in the family. This time, despite the fact that I used to ride up front, I’ve been told to go to the back of the bus and stay there. What else does it mean when someone considers me a patient rather than a wife? What else does it mean when, instead of showing compassion for what I’ve lost, someone accuses me of choosing to become disabled? What else does it mean when people direct their words to Bob and not to me, as though talking to me is suddenly an uncomfortable (and therefore impossible) task? It all signals an unwillingness to encounter me as I really am and to show me the respect due to any human being. It means that I have second-class status. It means that I am expected to justify myself at every turn, to reassure people that I will not make them uncomfortable, and to let them know how sorry I am for what a burden I have placed on their shoulders.

Of course, I categorically reject all of this nonsense. I will not sit in the back of the bus, and if anyone expects me to, I will not negotiate. I will not justify myself. I will not explain myself. I will not apologize for myself. I will just get off the bus and walk, in my own direction, and at my own pace. Is it lonely? Hell, yes. But, as Frederick Douglass wrote:

I prefer to be true to myself, even at the hazard of incurring the ridicule of others, rather than to be false, and to incur my own abhorrence. 

© 2009 by Rachel Cohen-Rottenberg

You are now reading my 100th post!

To celebrate this milestone, I’ve decided to publish a list of 100 myths about autism. I was going to make a list of 100 things about myself that you didn’t already know, but I figured I wouldn’t have enough material.

100 Myths about Autism

1. Autistic people are never creative.

2. Autistic people are never imaginative.

3. Autistic people are always good at spatial tasks.

4. Autistic people cannot empathize with others.

5. Autistic people can never have intimate relationships.

6. Autistic people can never be good parents.

7. Autistic people can never have friends.

8. All autistic people are highly intelligent.

9. All autistic people are unintelligent.

10. All autistic people are nonverbal.

11. Autistic people who are nonverbal have nothing to say.

12. Autistic people who are nonverbal cannot otherwise communicate.

13. Autistic people who are nonverbal cannot think.

14. Autistic people cannot love.

15. Autistic people belong in institutions.

16. Autistic people have no emotions.

17. Autistic people can never work for a living.

18. Autistic people just aren’t trying hard enough to fit in.

19. Autistic people are never interested in other people.

20. Autistic people do not need community of any kind.

21. Autistic people can never acquire new skills.

22. Autistic people can never lose existing skills.

23. Autistic people cannot reflect upon the mental states of other people.

24. Autistic people don’t make eye contact because they don’t care about what people have to say.

25. Autistic people are always logical.

26. Autistic people are overly emotional.

27. Autistic people are insensitive.

28. Autistic people are too sensitive.

29. Autistic people are empty inside.

30. Autistic people need pity.

31. All autistic people are like Rain Man.

32. The real Rain Man is autistic.

33. All autistic people are like Temple Grandin.

34. Autistic people cannot be happy.

35. Asperger’s Syndrome and autism are two separate conditions.

36. People with high-functioning autism have it easy.

37. People with high-functioning autism are not like other autistic people.

38. People with high-functioning autism are just socially awkward.

39. People with low-functioning autism have no quality of life.

40. People with low-functioning autism have low IQs.

41. Autistic people are a burden on society.

42. Autism is caused by poor parenting.

43. Autism is caused by vaccines.

44. Autism is a mental illness.

45. Autism is a disease.

46. Autism is a disorder.

47. Autism can be cured.

48. Autism should be cured.

49. Autistic people should be removed from the gene pool by pre-natal testing.

50. All autistic people are hermits.

51. All hermits are autistic people.

52. All autistic people think in pictures.

53. Most doctors understand autism.

54. The autism experts are always right.

55. The autism experts are experts on autism

56. Autistic people do not understand autism.

57. Autistic people should believe everything the experts say about autism.

58. The loved ones of autistic people should believe everything the experts say about autism.

59. The general public should believe everything the experts say about autism.

60. If you don’t believe what the experts say, you must be autistic.

61. If you can understand what the experts say, you cannot be autistic.

62. If you understand metaphor, you cannot be autistic.

63. Autism is a walk in the park.

64. If you have a sense of humor, you cannot be autistic.

65. If you can tell a joke, you cannot be autistic.

66. I love being autistic! It’s a blast! All the time!

67. I hate being autistic. It’s a bummer. All the time.

68. Autistic people are all alike.

69. Autistic children could “behave properly” if they really wanted to.

70. Autistic children “misbehave” because their parents enable them.

71. Autistic people do not work hard to get through the day.

72. After all, how hard could it be?

73. Autism is just an excuse to be insensitive and lazy.

74. Autistic girls do not present differently than autistic boys.

75. Autistic women do not present differently than autistic men.

76. Autism Speaks speaks for me.

77. Autism Speaks speaks for all autistic people.

78. Autism Speaks has autistic people on its paid staff.

79. Autism Speaks has autistic people on its board of directors.

80. Autistic people are puzzles with missing pieces.

81. Autistic people are broken and in need of repair.

82. Asperger’s is just the latest trendy diagnosis.

83. Having a trendy diagnosis like Asperger’s makes you popular.

84. Autistic people can never be athletes.

85. Autistic people are always clumsy.

86. All autistic people are completely incapable of eye contact.

87. Autistic people cannot carry on a conversation.

88. Autistic ways of being are inferior to neuro-typical ways of being.

89. Autistic points of view are inferior to neuro-typical points of view.

90. If you can make a YouTube video, you are not autistic.

91. If you can publish a blog, you are not autistic.

92. If you can post comments to a blog, you are not autistic.

93. If you don’t have an “official” diagnosis, you are not autistic.

94. If you can read this list, you are not autistic.

95. If you are reading this list, you must be autistic.

96. Myth #95 has just saved you a ton of money that you would otherwise have spent on an autism assessment.

97. Logic dictates that you deposit a small portion of the money you’ve saved into my PayPal account.

98. I mean it.

99. I am not kidding.

100. I will finish the list now because my autistic mind craves order and consistency.

101. Oh, what the hell, here’s one more.

102. Being on #102 in a list of 100 myths about autism isn’t driving my autistic mind crazy.

103. Being autistic, I always know when to stop.

104. Always.

105. Really.

106. Like now.

107. Or maybe not.

108. No one minds that I’m on #108.

109. It bugs everyone that I’m on #109.

110. I don’t care if it bugs people.

111. I have no problem ending this list on an odd number.

112. The fact that this list ends on an even number is a mere coincidence.

© 2009 by Rachel Cohen-Rottenberg