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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Thursday, March 23, 2006

 

Now what?

Now that we are all beginning to understand the impact of pity, and the interpretation of actions, what is the right thing to do? As a parent, what is it I'm asking for? It is enough to point out the erring ways of others, but what about the things that others can do for me, or for other parents with autistic children? Here are some things from my viewpoint, and I think other parents should add to the list so that we make a wish-list for our friends who otherwise don't know how, or feel the need to tippy-toe around the issue of autism:

1. Ask a lot of tough questions about autism to the parent who is dying to answer you. (Not every parent is the same, some are in denial about their children's autism). Tough questions, the ones that seem offensive, are actually not because you are asking them with an open heart.

2. Don't pretend the autism isn't there. Some people feel that dealing with something politely is to ignore it all together. This is really tough on the parent of an autistic child. The autism is there, our family lives are different.

3. Don't ignore the autistic child and play only with the other children. There is nothing more relieving for me than to see others just hang out with Adam, not just talk about him in front of him. Even if the autistic child doesn't seem to be paying attention, the need of the autistic child is your quiet voice, taking their lead, and patience. And if all it is is sitting with the child, either watching them or playing side to side, but not engaging, so be it. Some autistic people explain that being autistic is like being a cat. They like to circle for a long time, and when they feel comfortable with you, they will pounce.

4. Don't talk "dumbspeak" to the child with autism. Don't talk loudly as if they cannot hear you. Just talk slowly, and if they don't respond, don't demand a response. A friend is not a therapist.

5. Autism is not a cold. Don't ask "is he better yet? or "is he making any progress?" The inference is that he is not good enough as he is. If you want to ask about school possibilities or what his capabilities are, then just be frank and ask.

6. If a friend learns their child is autistic, talk a lot about it. Like death, not all people who mourn need or want to be alone. Don't fall silent. It made me feel as if something was terribly wrong and that hurt a great deal and broke my trust to the extent that I clammed up around that person all the more.

7. Don't ever say to a parent "you are so strong to do this," or "the reason you have an autistic child is because God thought you were special to handle it," or "I'm so proud of you for handling this," kind of gibberish. Having a child with autism doesn't mean we are strong or special, it just is. Open, detailed talk is more important than empty praise.

8. Understand that most parents with autistic children live and breath this every day. It may be the only thing they can talk about for a long time. Most people do not want to be distracted from the autism. My distractions are books, travel, movies and academic discussions and debates. But hey, that's just me.

9. Don't suggest that Adam go on the GF/CF diet because you know someone with autism who improved. Don't assume that becuase you know someone with autism, you know everything there is to know. If you know one person with autism, you know ONE person with autism. Every autistic person is different. If you're going to go on about mercury poisoning, chelation therapy, ABA, or tell me that you have a friend I should talk to to get more information, take a deep breath and PAUSE. Every parent of an autistic child likely knows more than the person or the therapy you are suggesting and may be philosophically opposed to what you are talking about. Better to ask a question about what a parent thinks about the subject at hand than to suggest it might "improve" the child.

10. Many parents, even the fighters, can become depressed. Depression is not a weakness, actually, it can be a great sign of strength. Many great inventors, composers, activists, writers and artists, have been depressed. It often means that the person can see a whole picture that others may not see. There is the depression of the person who cannot see, and the depression of the see-er. There is also joy in depression. The are entwined. What parents with autistic children face everyday is a lot of bias and discrimination in public places, in schools, even from doctors. We are faced with people who believe that children "get" autism like a disease and hear it in the media everyday. Parents can get confused with so many differing messages about how to help with hundreds or therapies and diets, myths about vaccine poisoning and more. There is no one expert or piece of information that a parent can rely on. Some parents are at a war of belief with each other within the community of autism, whether or not autism can be cured, or an autistic fetus should be aborted when the opportunity presents itself in the future. Others, like myself, believe that autism is a way of being and that these pervasive attitudes are a human rights issue. When our children are denied access to camps and schools, or supports within them, it is an issue of rights...I could go on. Anger abounds and many of us may sometimes come on too strong. Forgive us.

11. Understand that there is anger and then there is forgiveness. I have been angry about that event with the friend, but also acknowledge that to "err is human, to forgive is divine." Some friends can grow past debates and disputes, others cannot. I have made many friendships from disputes (you know who you are XX) to find that many of us are exactly the same.

Ah, the point at last.

I want to be able to help some of my friends with the tough questions, or who are just uncertain what to do with a parent who is someone raising an autistic child. Some just know how to deal with me intuitively, others seem to need a little more direction. I'm curious if others have anything to add.

10 Comments:

Blogger Do'C said...

Some just know how to deal with me intuitively, others seem to need a little more direction.

I see nothing inherently wrong with needing direction (understanding how someone expect's to treated, especially if it's not cultrually propagated, is not always easy or intuitive for all for any given person).

Likewise, I see nothing inherently wrong with giving direction, for the same reason.

4:52 PM  
Blogger Lisa/Jedi said...

Great idea, Estee!

I do have an addition to the list... if you are with (in public or private) a parent/family with an autistic child, & the child is having difficulty, please give them the "space" to sort things out, no matter how uncomfortable it may be. It is natural to want to break in, give advice, try to relieve the situation, but many families have very specific ways of helping their children cope with meltdowns, ways that are developed through much trial & error. With my son, for example. you can't say certain words if he's having a meltdown, or it makes things worse. Another suggestion is to be prepared for a child with autism to ignore or back off when meeting a person outside the immediate family (even if they know them), or to want to touch that person (like shaking hands). It's not necessarily rejection but the "cat" think Estee mentioned :)

I had an experience in church last week that also illustrates a difficulty we commonly have in public- B & I were sitting together & had made a space for dad to join us, when a well-meaning person (who is aware of B's autism) tried to sit in dad's place... I politely asked them to save the seat for my husband, & although my husband was willing to sit farther down the row, B really needed to have one of us on either side of him in order to cope with being in church. I was kind of ticked-off that someone would move in like that, to be honest, but have to acknowledge that most folks are not aware of the ways in which we work, subtly & not-so-subtly, to help our children regulate themselves in public. It's another story, of course, if the family invites you to join them, but keeping these sensitivities in mind is very helpful.

Thanks for the opportunity to chime in!

5:01 PM  
Blogger Kristina Chew said...

Don't be afraid to realize that what you may have concluded may be entirely wrong, as your child changes and grows---that you may have to double back and start from scratch---that you must look at your child and secondly at your thinking.

8:00 PM  
Blogger Mom to Mr. Handsome said...

Awesome post! I wish I had those points to refer to when Gabe was first diagnosed. I became so frustrated with people and their comments. It's nice to know that there are parents that are dealing with some of the same issues.

Kristin

8:56 PM  
Anonymous Anonymous said...

Thanks for sharing! Your words are so true. ~Tina (mom to a 5yr autistic and wonderful son)

10:21 PM  
Blogger Zilari said...

Beautiful words, and very true ones. On behalf of...myself, thank you.

11:35 PM  
Anonymous Emily said...

I love this post! It goes to the heart of what I want people to know about us and autism. I want people to know that though I feel down sometimes, it’s not because my child is autistic and I’m trying to do so much myself. It’s just the way things go in families. It articulates better than I ever could why I feel bad about telling strangers that my son is having a tantrum because he’s autistic. I don’t want to reinforce their stereotypes that these children are nothing but trouble.

6:59 AM  
Blogger Joseph said...

That's a well thought-out list. It reminded me of the times my mom asks if Mark is "better" and what we are doing about it.

3:21 PM  
Blogger Gina said...

For me, as the mom of a three yr old non-verbal autist, this post mainly made me want to shout "Amen!".

Another one might be: Don't ask specific questions about the child's development like, "Is he talking yet?", "Does he still line his trucks up in a row?" because if those milestones haven't been reached, we are reminded. If they reach them, we'll let you know if it's necessary.

And for mothers, never ask how his "little" therapy is going.

10:05 PM  
Blogger luckydevilgirlyshow said...

I have a friend who's child exhibits most "classic" symptoms of autism such as not connecting to children or adults, looking through a person rather than at them, walking on tiptoes, not speaking (she does seem to speak her own language to herself), not being aware of her surroundings, not responding to speech. She is three. I have a couple of children, including a four year old, and teach classes to children in her age range, so I am aware of what would constitute traditional development in most kids her age. Her parents seem to not realize that she seems different. They will occasionally make references to her lack of socialization with other children to be the cause of her complete lack of interest in playing with other children, interacting with anyone, or being able to communicate. I have only known my friend for about 6 months, and feel a little intimidated bringing up such a potentially intense subject.

But I also think that this little girl is lovely and sweet and is having a pretty difficult time with her family. I see that her parents are often frustrated with her, probably because they don't understand why she is not reacting the way they think she should. I think that if she would greatly benefit from various speech and occupational therapies regardless of whether she is autistic or has some other situation going on for her. I want to suggest that they get her evaluated, but don't really know a good way to go about it. Is there any "good" way to bring this up?

6:59 PM  

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