We are so thankful for the outpouring of advice that has flooded in for us to share with the Autism Speaks Community. Who better to give advice than you all, the people that know best! We have heard from people on the autism spectrum, parents, siblings, teachers, therapists, and beyond. Your advice has been broken down into categories, and we will post accordingly!
It gets better! Take one day at a time and remember that there can be a wonderful future for these kids. Love them and support them as much as possible. –Leann
The best advice I can give a newly diagnosed family is to have a plan, be consistent, and take it one day at a time. And always remember, everyday is progress! –Whitney
Although you need to plan for the future, don’t get unnecessarily “worked up” worrying about all the various “what ifs.” Narrow your worries to immediate concerns. The “what ifs” may never materialize. Trust in yourself that you will never accept the way someone tells you to do something as being the “only way”! I have found the best result in everyday life has come from “thinking outside the box”. You must put yourself in their shoes and feel, smell, see, hear what they do and then you can address the situation. – Kimery
Be ready to deal with what comes in the future. –Joy
We rode the train to our local zoo and when I corrected my son as to which side to get off the train he had a huge tantrum, lots of people staring it was horrible. I told his teacher about the incident and she said, “Lora, you can’t let what other people think EVER bother you, they have no idea what you are going through so just forget them!” The next time we went to the Zoo my girlfriends asked if I wanted to “avoid” the train and after a moment I said, “No. I want to go straight to the train”. I am not putting him in a bubble.” He never had a problem with the train since. Live your life and don’t let other’s stares or commentary get you down. Their judgment, their problem. –Lora
Be patient, go with the flow, seek the best therapy you can find, and love them through it all. –Sharon
Sometimes you just need treat them like they are normal… they act up discipline them, they do something great give them a kiss and show them all the time they are loved… –Marlene
I am not a parent but I do work with kids with autism. Just remember treat them with respect and treat them as you would any kid. –Debbie
Be your child’s own “job developer”! When it comes to your son/daughter, who knows them better than you do? Think expansively when considering an workplace area that may best suit their needs, and then network, network, network! Never give up! –Ian
It isn’t a sprint. It’s a marathon. Think about the big picture. -Robin
I have to be honest, I don’t know you very well. I don’t know if I can count on you or how reliable you’ll be. I’d like to think that you have only good intentions and that you’ll only get better, but I’m not naive. I know that you’re just as uncertain as I am and quite frankly, that scares me.
You see, my child has autism and as such, the past has presented me with a lot of fears as well as challenges that I’ve had to learn to overcome. I’ve also had to learn how to teach my child to overcome them. The past tends to remind me of those that turned their backs on us, had nothing left to help us with, gave us a lot more questions than answers and basically dropped a bomb on us before leaving us to the cold. To put it mildly, the past has not been too kind to my family. I’d much rather forget the past and move on, which is where you come in.
Dear future, I’m coming to you with an open mind. I know you’re not perfect and that there is already a lot of demand being placed on you. But I have to make you understand that I have a lot riding on you as well. I need you to be kind and compassionate. More so, I need you to have a lot of understanding and to be very accepting.
You see, I don’t know how much longer I’ll be around to take care of my child. And my child needs me so very much. Autism has made my child and I feel very alone in this world. We are looking to you to pick up where I will eventually leave off. I will be depending on you to be there for my child when I no longer can be and I’ll be depending on you to be bright and loving.
I am doing the best that I can now to prepare my child for you, but that’s a daunting task for the best of us. Since my child has autism, it’s just so very much harder. My child needs more guidance, more support, more understanding and more acceptance. The present provides some of these things and it has been helpful. But if I wasn’t here, it wouldn’t be enough.
The present is very nice and friendly but to be honest, I feel like I’m in a dentist’s waiting room and the present is the receptionist. I’m asked a lot of questions to which I answer, but have no idea what any of it means. I’m made to feel welcome with some magazine articles to read and the present even makes some small talk that resembles information sharing. But again, gives me no real answers.
For what seems like forever, I sit and stare at the present while they are constantly writing things down, filing things and taking phone calls from everyone and no one, while I sit there trying to keep my child calm. We’re waiting for you… the future.
Dear future, I’m going to need for you to be prepared. I need for you to do more than just wait until I get to you. The past gave me an awful lot of questions for which the present had no answers to. I will be needing you to provide those answers.
I can’t imagine what life will be like for my child if you don’t have those answers. Answers such as where my child will live, and with whom. Will my child job have a job waiting? Will there be better medications and treatments available that offer more consistent results? Will there be love waiting for my child with the possibilities of a family as well?
I have no one else. You’re it. I’m sending you my child whether you like it or not… for better or worse. Dear future, if you’re not ready for that, please do whatever it is you have to do to be ready. My name will be called soon and my child will be needing you. So I’m needing you right now. Please be ready.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.