Advice for Parents of Newly Diagnosed Children
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