Katie Katie Parsons is the creator of Mumbling Mommy and is a freelance writer, editor and communications specialist. She works from her home office on the east coast of Florida. Most often she writes about life in a combined family of five children and what it's like being a full time work-from-home parent. Feel free to pitch guest post ideas or just drop her a line at katie@mumblingmommy.com.

A Guest Post by Lindsey Nichols

Read the rest of the posts in this series here.

Don’t say “I’m Sorry” because parents of
autistic children are NOT sorry.

I recently posted about how I knew my son was autistic. I said that I would also write about other responses I hear when people find out.

If you are unsure how to act around a family with an autistic child, take a few tips from me.

Here is what not to say or do — and what to do instead. This may not be the opinion of every family with an autistic child, but this is my take on it:

Please, pretty please think before you speak.

This may sound like common sense, but I will share a few examples of things said and how I take it.

“I am so sorry.” This is usually meant well and I get that. I never respond back negatively, but this is what I think — “I’m not!” Really, I don’t need your pity and that is exactly what this conveys. Pity means that you think that it is OH SO HORRIBLE. In the beginning, these words would cut like a knife reminding me that my life would forever be looked upon as sad. We don’t need pity.

“That must be so hard.” Again with the pity. This says “Wow your life must suck.” And yes, it is hard sometimes, but you find a new kind of “normal” and because you love your child it isn’t as hard as everyone else thinks it is. We are indeed Super Parents, but you would be too if it was your kid.

Don’t be afraid to ask questions.

A response of “Oh really? What is he/she like?”  goes a long way. I am just as proud to tell you about him as any other parents are of their child. Your interest means you care. Asking a question like that also leaves out any kind of assumptions. No, my child is not like Rainman or Einstein or insert any other famous autistic person here____. Please don’t ever say any of that to a parent of an autistic child. Autism is a spectrum disorder. It primarily involves communication. Kids can talk or not talk. Each individual child is different. Just because you have met one autistic child does not mean you know autistic children. It just means you met one autistic child. This leads me to my next point…

Don’t try to “fix” it.

I know you all are well wishers — but I don’t need the latest and greatest therapy, diet, alternative medicine, or theory on autism. Trust me, we as parents have read, heard, and tried EVERYTHING out there. Unless you are a teacher, therapist, doctor, or parent of an autistic child keep your advice to yourself. We probably already know all about it. Again, if you want to ask questions about what therapies we have tried or what we have found to work, that is okay. Questions are almost always better than starting out a statement with “my brother’s wife’s sister’s grandson “etc.

Don’t stare.

It is quite acceptable for children to stare. It is their curiosity. Adults — don’t stare. It is rude, and he is doing the absolute best he can. I cannot force him to be any other way than the way he is. If it bothers you, well, than don’t look! If you wonder why he whistles then ask me, the same about flapping his hands, and repetitively playing with his toys! I don’t mind explaining.

In addition to this advice, here are some things I wish everyone knew. Yes, we are busy. We are just as busy as parents of “normal” kids. Our lives don’t revolve around soccer, baseball or football however. They revolve around PT, OT, Speech, Developmental therapy, IEP’s, meetings at school, and sometimes sports. We are busy, but we are lonely. We can’t always take our children to all of the places you can. Movies and dinner out as a family is a thing of the past.

We would love nothing more than for you to invite us over. At the same time, it makes us nervous. Please be understanding of our not so normal child. Dominic likes dark places and getting away from the noise of crowds. Don’t be alarmed when he wants to wander into your basement or take refuge in a bedroom at the far end of the house. It is nothing personal. It can make me a nervous wreck the first time we visit someone’s house. Will he wander to another room and they get offended by his lack of social norms? He can be loud and jumpy too, and flops on furniture. Ugh! And he whistles very loudly at times. Please be patient and understanding. It is difficult to find a babysitter for a child like him, let alone to find one you trust enough with a child that does not speak or communicate in a way they would understand. It is difficult to maintain friendships when you are stuck at home most of the time. I have been forced into an antisocial realm with him. Reach out!

The biggest and best thing you can do is love these kids. They are amazing individuals. They do not judge or hate. My son has no preconceived notions of race, gender, sexual orientation, or age. Autistic children are unique. They belong in this world just as much as the rest of us, if not more. They deserve to be treated with dignity. And the parents of these kids, well, we deserve dignity and respect as well.

Educate yourself. Be friendly. Offer a smile in the store or at the park. Come to visit at our house so we don’t feel so stressed. Don’t take offense if we can not join you for outings as a family. Arrange play dates with us. Educate your children! Teach them to love and be kind to these children. Expose them early and often to children with special needs. Make it not so weird or strange for them. Teach them to stick up for them and not to use words that hurt like stupid, retarded, freak, etc. Encourage them to enter this child’s world to play. Accept us, love us, because even though we can’t do it and show it the way we would like, we accept and love you!

Category: Special Needs

Tags: advice