By Geri Dawson, Chief Science Officer, Autism Speaks
Last week, a paper was published in Pediatrics that argued against the routine screening for autism by pediatricians. Three investigators who are part of the Autism Speaks Baby Siblings Research Consortium and I submitted a letter to the editor in response to this paper, which has now been published. The link to the original article and the letter are provided below. Our letter provides a strong rationale and empirical evidence to support the American Academy of Pediatrics recommendations that all children be screened for autism at their 18 and 24 month checkups.
This exchange highlights the important role of the scientific research in directly influencing policy and clinical practice. We were able to cite research, much of which was conducted by Autism Speaks Baby Siblings Research Consortium investigators, to counter the inaccurate statements by the authors of the Pediatrics paper.
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!
Learn to celebrate every achievement, both large and small. –Liz
My advice is this: Loving persistence. There will be many, many times when you are trying so hard to connect with your child and you feel so frustrated because you believe that you are not getting through to them. Don’t stop. Your efforts in communication are not in vain, it is heard, it is cataloged in their mind, even though there is now outward sign of it. Be persistent, there will be moments that you will get feedback from a conversation that took place quite some time back, that’s how it clicked for us, the realization of “wow! He did hear me!” It’s worth every frustrating effort at those moments. Persistence is the key; you’re not being ignored, just not acknowledged… yet. –Thomas
Trust your instincts and your abilities to work with your child. Trust that you know your own child best and while the experts have a lot of training and can offer your child help, you still know your child best and you are going to be the most important therapist in your child’s life.
I wish I’d know that autism does not have to equal pain and suffering for parents and their children. It took me a few years to understand that autism can also equal joy and fun and laughter. –Kyle
Don’t be sad about what your child CAN’T do, really embrace all of the things he/she CAN DO! –Diana
Your child is not a diagnosis; they are always your child, a person, unique as any other child. –Courtney
As the parent of an autistic child, you don’t need to become an expert on Autism; you just need to become an expert on your child. Watch them, study them, and learn what works and what doesn’t. Then help those around them to understand. –Anita
It’s not about you. Put everything else, yourself, your pride, denial, any preconceived ideas, any fears of stigma aside and get to work as quickly as possible. Save your child with the same urgency as you would someone who is drowning. And then? Savor every small victory. As they begin to find themselves and you feel like you can breathe again, follow them wherever it is they take you and enjoy, enjoy, enjoy the journey. -Ken
These children have such a challenging time constructively processing feelings and emotions. My son at a young age started getting up at the end of movies and dancing during the credits, usually with what seemed to me like a large amount of emotion. This sparked an idea. When I would observe him having an emotional overload or getting frenzied I would turn on music and let him dance it out. He is 9 now and loves to dance it out! We just make room and let him go. It is one of the small things that he has expressed to me that really helps him. –Ellen
1) Grief and self-pity are natural feelings when you first get the diagnosis – allow yourself to experience these emotions and forgive yourself for them. Once you get past it – and you will – focus all your energy on becoming the best advocate and teacher for your child.
2) Your child will be unique in the way he/she is motivated, responds, and takes in information – and you know them best. Share these “tips” with everyone who works with your child and work together to build upon your child’s unique qualities and strengths. Always keep looking forward.
3) Appreciate your child for who he/she is including their unique personalities and perspectives. Accept them and take the time to fully connect with them. He/she will bring so much joy to your life – more than you can. –Stacey
Establish a bond of trust between you and your child as soon as possible. -Clara
Remember not to get comfortable w/what you know…things are constantly changing & you must be prepared for many different obstacles to overcome!!! I wish you all the luck! & always try to have patience even when it’s so hard! –Brandye
The diagnosis does not change your child; it simply changes how you need to work with your child. Do not be angry at yourself or doctors, it does your child no good. Forget the past and the what ifs, look ahead and set the bar high for everyone, including your child. Keep hope alive!! -Amanda
Don’t fear the label. The “diagnosis” will help you get the early intervention services that will change your world later on. Don’t get hung up on the milestones your child is not meeting and find joy in your child each day. –Melissa
IACC Services Workshop: Building a Seamless System of Quality Services & Supports Across the Lifespan
The Interagency Autism Coordinating Committee (IACC) will hold an IACC services workshop, “Building a Seamless System of Quality Services & Supports Across the Lifespan” on Monday, November 8 in Rockville, Md. The meeting is free and open to public and will also be available as a live videocast.
The workshop will focus on policy issues related to the system of services and supports for people with autism spectrum disorders and their families. Visit the IACC website for more details.
I am Molly, and yesterday I found out my son has autism spectrum disorder. The term “found out” is sort of ridiculous, because you go through months of evaluations for this sort of thing. But yesterday I found out, my husband and I said it to each other – “our son has autism” – and so I’m ready to step into the light.
My son has autism. And he’s amazing. And it’s hard, but it’ll be great. And great trumps hard any day in my book.
At the party, the other children surrounded the birthday boy, sweetly singing (and shouting, for the less musically adept) “Happy Birthday.”
There was pizza, and cake, and veggies with dip. Soda was in cups. I looked around for my son and found him, hand on a light switch.
Luckily, the lights were connected to nothing noticeable. But his hand caressed it and flicked it up and down, a ritual repeated many times daily. The front of his clothes were soaked from the water table at the children’s museum. As we gently moved him away from the lights, he melted down. Logic told us it was past his naptime, but inside of me, something whispered.
– Do you see? He’s not like them.
My husband looked over at me and asked what was wrong. I blinked and looked up, anywhere else.
– You’re afraid he will never have a party like this.
My eyes blinked back tears, and I stood with the baby and walked over to the window to regain my composure. I watched the wind rustle through the green leaves on the trees, and I grieved for myself. Not for the boy, who was happy as could be doing things his way.
It was me that needed to adjust, not him.
I came in from the garage after a much-needed day of shopping with a friend. A small head popped up over the sofa, and he ran to me, talking as best as he could.
– “Nggah! Raaah! Eye duh. Eye gah. Nuh! Nah! Ennah.” (or something like that)
Whatever he had to say, he was quite adamant about it, as he laid his head on my shoulder and gave my other shoulder three pats. He rested there for a minute, about like any young child. We walked into the living room, where Papa sat with the baby. My boy pulled me to the bookshelf, beginning the same thing we did a dozen times a day. I started handing him DVD cases, and he would push them back up until I got to the one he wanted. He would seize it and run off to sit and gaze at it happily. I smiled as the ritual was repeated. I knew that my kitchen cabinet held several DVD cases, and that in there, he would admire them like a photo album.
He was still awake.
I crept up the stairs and opened the door. A little hand pushed an empty bottle into mine. Again, a nightly ritual, as I went down and put a minute amount of milk in it. Back up the stairs I went, and laid down with him on his bed.
First he laid on my legs, using his blankets as a cushion. Then he moved up to lay next to me. I began to sing our nightly songs – “Good Night,” “Twinkle, Twinkle, Little Star,” and “Ollie is a Child of God.”
A small hand went up to my cheek and cupped it. And in that moment, life was perfect. Small fingers snaked into my hair and touched a few, tentatively. He whispered something and cooed at me. I had no idea what he was saying, as usual. But my heart translated for me.
– Mama, I love you. Mama, I know. Mama, I chose you and Papa before I ever came here. Mama, I am happy. Mama, I am perfect, just as I am.
My eyes filled with happy tears – another daily ritual. I finished the last song as on-key as I could, and he softly cheered, “Aaay.”
“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.