A mother with Asperger's Syndrome |
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I am a happily married mother of three children, aged six, four and two-and-a-half. A few months ago, the problems I had experienced all my life were finally given a name: Asperger’s Syndrome (AS), a form of autism associated with high level verbal skills and average, or above average, intelligence. Typical symptoms, taken from The American Psychiatric Association Diagnostic and Statistical Manual - Version IV, a widely used international standard, include:
People with AS tend to be literal in language, very "black and white" in thinking, perfectionist, but generally disorganised. They frequently appear arrogant, since they cannot understand other people’s thought-processes. I also have dyspraxia (impaired co-ordination) and dyslexia, anxiety, insomnia and sensory hypersensitivities. No one really knows what causes AS, and I am certain I have had it since birth, but there is evidence that certain structures of the brain, that direct social functioning, are different in autistic people. Consequently, in order to "Pretend to be Normal", I have had to actively observe, memorise and de-code the behaviour of others into rational "rules". The natural state for all autistics is to live inside our own heads. Caring for other people, even our own children, forces us to live outside that comfortable place and face a world, which is essentially alien to us. To survive, I have had to develop many strategies. Mind-Reading and Babies
Fortunately, my "rules" of interpretation were relatively simple:
I breast-fed all of my children, which I did not enjoy, but it would not have occurred to me to do otherwise. I wanted to give them the best and nothing less. For me it was simply a rational decision, but I was shocked to realise how much emotion other people had regarding this and similar issues, and could not understand why many were put-off by my "fanaticism" when breast-feeding research became my latest "obsessive interest". Since I was unable to be sure when my baby was hungry, I tended to offer the breast very frequently. Often, it was rejected, but in the process at least I cuddled my baby. Unfortunately, people often criticised me for it, believing that it was the cause of my anxious, emotional behaviour and so would advise me to "take a break" and let someone give the baby an occasional bottle (advice that horrified me and made me feel undermined). A friend recommended an African-style sling when my first child had horrendous "colic" and subsequently, I "wore" my babies most of the day. This engendered even more criticism that I was "doing too much". However, as well as greatly relieving my first’s colic, the sling raised the baby’s head up to my chest level so (s)he could make eye contact with and interact with other people. I believe this helped compensate for lack of eye contact and interaction from me. It may also have desensitised my tactile hypersensitivity and enabled me to be more affectionate. When I had two more babies, the problems more than trebled, but at least experience gave me confidence to do what I knew worked for me. The biggest problem I had with three children was switching attention from one to another. While I was attending to one, another was crayoning on the walls; when I run to prevent something dangerous happening, I forget someone was waiting for a diaper-change. Like many Aspies, I have the curse of needing organisation to feel calm and in control, but lack even the most basic organisational abilities. With three children in the house, chaos is the norm and I find that stressful. "Every Child is Different" – Unfortunately!
I am continually frustrated to be told "Every child is different". Small children often appear to act irrationally, and I can only understand rational behaviour. It if doesn’t make sense, I find myself running in increasingly small circles trying to "de-code" it. I rationalise this as parenting problem solving, but in reality I find it stressful when I cannot understand something. Consequently, I have found it immensely helpful to talk to child psychologists about "normal" development and the way children think. Once I understand the behaviour, it is no longer stressful. SocialisingMy interactions with my children tend to be functional or complex conversations. Just as I cannot "small talk" with adults, I am unable to "chatter" with my children, the way other parents do. My mother was shocked the other day when I put on my son’s coat without speaking to him or making eye contact, although he was perfectly happy. This is why I feel it important that my children socialise with other people whenever possible, although this is the one thing I find the most difficult. Social behaviour for me is never instinctive. I have to consciously observe body language and facial expression, try to estimate appropriate responses and consult my "database" of prior experience to negotiate the complex social maze. Following the rhythm of conversation is difficult: when it is my turn to speak, how long to speak for Etc. It is hard to stay on topic, or follow the other person’s chain of thought. I make mistakes, and more when I’m stressed, since every conversation requires maximal concentration: and mistakes mean people get irritated and offended by me. The more this happens, the more stressed I get, and so the more it happens, in a vicious circle. The result is social isolation: no one to baby-sit, no one to visit when the kids are getting me down, no one to compare notes with, no visitors to the house… Now that the children are in school and nursery, they are meeting more people and developing friendships of their own, which takes the pressure off. Although I like being with friends, typical "at-home mothers" socialising is beyond me and I’ll be glad to be "let off the hook". Advantages of Being an "Alien" Parent
My difficulty switching attention has meant that from the time they could walk, my kids have learned to shout and tug my clothes when they needed something, and then point or lead me by the hand to indicate their need. This has lead to them being a little loud and "assertive" and people have mistaken this behaviour as rude, but actually, they are very polite, caring children. I feel upset sometimes at my inability to play with my children, bearing in mind that I couldn’t play with children when I was a child! I simply cannot think flexibly enough to play like them. So my children have learned to play with each other or alone. I think they see me as their facilitator. I provide the playdough, or the potato prints, or just "technical advice" ("What do ghosts look like?", "How many buttons on a TV?"); they provide the imagination. Although this may seem unfortunate, people are amazed at my children’s ability to play together, their independence and freedom of expression. As for me, I now know why I found life so difficult and I wonder if I would have embarked on having a family if I had known I had AS. Possibly not. The stereotype is that we are unable to empathise, which is extrapolated to assumptions that we are unable to love. Difficulties in reading a baby’s cues would be assumed to result in neglect and I have had professionals worry that I might not know how to keep my children safe. But lack of empathy is not psychopathy, and it is possible to use reason instead. Sometimes it is better – how many things do parents do, not because it is wise, or best, but simply because that is the way "everyone" is does it? Parenting is a struggle and I am often tired and stressed, with too little respite and too little support, but life with AS is always a struggle anyway. It is as if we have been dumped on an alien planet and nobody told us the rules, but parenting also has unique rewards: On Valentine’s Day, I received a card. Emma had written "Mummy, I love you" in it, surrounded by red hearts, Sam had drawn "a triangle" (he said) and Alice whispered "I put extra glitter on it to make it the prettiest card in the world!" That’s what makes this particular struggle worth it. Recommended Reading:"Asperger's Syndrome: A Guide for Parents and Professionals", by Tony Attwood "Anthropologist on Mars", by Oliver Sacks (biography of Temple Grandin) "Pretending to be Normal" by Liane Holliday-Willey (a woman with AS) Internet Websites:http://www.users.dircon.co.uk./~cns/index.html Please also look at the links pages on the Autism FAQ pages. Compiled by Anna
Hayward (c) 2001. |
Although
I did not know it then, many things I did with my babies greatly
helped me develop a proper bond with my children, despite my
disability. Unable to read non-verbal cues, interpreting my baby’s
needs was tricky. I have heard that most mothers can distinguish
one cry from another, but I was never able to do that, unless
it was an obviously alarmed cry.
The
perfectionism associated with AS often means I am accused of
trying to be "the perfect mother". Unable to use "instinct",
I have relied on books. I have difficulty generalising and most
good books use specific case histories as illustrations. Likewise,
advice from professionals is invariably too unspecific. The only
way I know is to discover the "rule" and apply it.
I
have been told that my children have exceptional abilities to
communicate their feelings and needs, possibly to compensate
for my inability to "read" them, like other mothers.
Alice stunned a psychologist when she was two by saying, in the
middle of a tantrum, "I don’t know why, but I can’t
stop crying!" Emma, at six years old, is a playground politician
and diplomat, with amazing social insight.