With Autistic Spectrum Disorder, It’s My Way or Else. Right?
I see this frequently in my internet travels: a person – usually a woman – asks for advice in dealing with a child or a husband or partner with Autistic Spectrum Disorder (ASD). The person with ASD is frequently angry, sometimes, aggressive, often unwilling to change or adapt. They ignore the needs of others and are selfish in their demands and impatient with everyone around them. Meltdowns are par for the course.
The person asking for advice says something along the lines of “I love my child unconditionally” or “I knew what my partner was like when we got involved” and wants to know how to cope with their Aspie and for tips on how to make life more…pleasant, easier, less stressful, less scary.
It often sounds like they are loosing the will to go on.
As a parent of at least one child with ASD and as a woman living with it, let me say this loud and clear: ASD is not an excuse to be aggressive or angry. It is not a free pass that allows us to disregard the feelings of others in order to indulge our own emotional needs. It does not not give us permission to be abusive and neglectful or not to do our best by our loved ones each and every day.
It is not a licence to be an ass.
ASD is a way of seeing and interacting with the world. It impacts how we process information and how we are stimulated by our environment. Here is what living with this condition permits us to do:
1. Recognize our unique talents and skills. We are great at focusing on things that interest us. This is a real asset for the scientists, artists, musicians, and writers among us. In fact, even if we just love bird watching or train spotting, this is a great trait to have.
2. Acknowledge our limitations. For many of us, social gatherings and crowded, noisy places can be overstimulating. They can lead to feeling overwhelmed and totally confused about just about everything. It is perfectly acceptable to admit we don’t like these kinds of places and to manage our lives such that we steer clear of these places as much as we can.
3. Ask for help. There is never any shame in saying “I don’t understand what you mean or what you want from me. Can you explain it to me in another way?”
4. Help others to understand the way we see things. Sometimes other people need help to understand us. We have a responsibility to them to explain why we made a particular choice or why we do things a certain way. We can ask that they help us with managing our environment or with communicating in a certain way. We should not be demanding that they do things our way or face our wrath. Just because we have Aspergers it does not mean we can disrespect or intimidate others in order to make our lives easier.
5. Be our own best advocate. We should never hesitate to stand up for ourselves and work to make our families and our communities more autism inclusive. We should expect to be treated fairly and for reasonable adjustments to be made to accommodate our needs. Note I said “reasonable”. Demanding that all trips to the super market take place after 11 pm or that we be allowed to dominate the tv/computer/game system so that we can do whatever we want whenever we want is not reasonable. Neither is leaving our spouse or partner to deal with the children all of the time because we don’t like the noise and chaos. Advocacy is one thing. Abdication of responsibility is something else entirely.
Acknowledging my own ASD has been a revelation to me. I understand my Aspie son in ways other do not and feel better able to help him learn to have a rich and full life free from the angst and sadness that has marked much of mine. It has given me permission to exhale and to create a life that works for me, not against me. I no longer feel like I need to be the most popular, the funnest, or the most outwardly successful in order to be a “good” person. Enjoying reading, peace and quiet, obsessing over my favourite tv show or book, refusing to wear clothes that irritate me,the occasional stim, stepping away from the Fast Track and easing into the Slow Track – these are harmless and they make me feel good. There is nothing wrong with that.
There are still times, however, when I must do things I do not enjoy and that grate on my nerves, rattle my senses, and leave me drained and exhausted. That is part of being an adult. It is called putting on your Big Girl Pants, Manning up, getting on with getting on.
It does not mean I get to take it out on everyone around me. It is my responsibility to figure out how to manage my emotions. It means that life is sometimes…unconventional. Wonderful – a conventional life would be boring.
It should never be violent or scary.
Being an Aspie is who I am. My neurotypical family members, friends and colleagues are with me on this journey, as I am with them on theirs. Although I struggle at times to understand them, it is my responsibility, as a wife, daughter, mother, and friend, to try.
Sometimes I screw it up. Being an Aspie also means I have had to learn to ask forgiveness. A lot. But I have also learned to be forgiving. The two go hand in hand.
It’s common decency. It’s being human.
Being an Aspie does not excuse me from that.
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