Home > Family Services, New Diagnosis of Autism > Advice for Parents of Newly Diagnosed Children

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

 

 

  1. December 20, 2010 at 9:10 pm

    I agree…parents know more about their child than what they think. Yes, there’s grief, but it’s a selfish sort of grief…for the loss of dreams that we have for our children. That soon passes as we focus on helping our child(ren) be themselves, learning and growing and adapting to the world around them, seeing things differently than we once did.

    But for those folks who are new to the diagnosis…it’s not the end of the world. It’s simply a different way at looking at the world. It’s up to you how you want to handle the world….

    • sherry
      January 18, 2011 at 8:18 pm

      I couldn’t agree more with your comment. My 19 year old has taught me incredible parenting skills (an abundnce of tolerance & patience), I am forever grateful!

    • gail hughey
      February 7, 2011 at 7:46 pm

      i agree with you totally !!!

  2. Anet
    December 20, 2010 at 10:05 pm

    my kid is great, my kid can make his own way in this world, he teaches himself and others better then any one can teach him, he gets his point across in his own way, he is just his own person, he loves and cares for his animals, he is the greatest and bravest person I’ve ever known and I feel truly blessed

  3. December 21, 2010 at 8:55 am

    Excellent advice was provided in this article. As a special education consultant and parent trainer I have witnessed all different types of emotions by families who have a child with special needs. Remember, that as the parent you are your child’s best advocate. It is important to get informed of your rights and your child’s right. Stay strong, be positive and even though maybe your child will learn differently, they will learn and you as the parents are the best educators!
    http://www.skillfulsquad.net
    http://www.skillfulsquad.blogspot.com

  4. December 21, 2010 at 10:52 am

    I added this post to my “Directory of Blogs with Tips for Parents and Individuals New to Autism or Asperger’s.” I started this Directory back in May, and have horribly neglected it! You’ve motivated me to make regularly updating it a priority in 2011. Thanks!

    http://www.able2able.com/2010/05/directory-of-blogs-with-tips-for.html

  5. December 22, 2010 at 2:11 pm

    Everyday God gives us new mercies and I see those mercies in my son Dominique. Our journey through Autism is for one another. We are touching lives all across the universe with our experiences. Our experiences no matter how great or small builds character, strength and intensifies the love that we have for our loved ones. Integrity is what our children teaches us – The integrity to fight for what we believe in, to stand for those who cannot stand for themselves and to show unselfish love for our fellow brothers and sisters in our unique Autism Family!! GOD BLESS YOU ALL

  6. Erika
    December 22, 2010 at 4:33 pm

    There is always hope for your child. Never give up.

    • gail hughey
      February 7, 2011 at 7:48 pm

      very true

  7. kevin
    December 22, 2010 at 10:55 pm

    i am the one thaT IS WORKING ON WHAT IT IS TO HAVE THE BLESSING FROM GOD I AM THE ONE THAT IS NOW OUT INTO THE WORLD I HAVE BROKEN THE BAIRER OF THE WEEKNESS AND NOW I HELP THEONES THAT SAY SO MUCH ABOUT ME I AM GIVEN THE GRACE BACK,I HAVE NO SORROW I LOVE LIVE GIVE AND SHARE ILL GIVE IT TO YOU

  8. Sam
    December 23, 2010 at 10:11 am

    The diets (GF/CF) helped a lot. Different therapies made a difference. Finding doctors who will listen and do the testing needed to find out what is going on inside started the most change! Research… Research… Research, the internet was my only friend! When you see the change it is priceless!!

    • Tiffany
      January 9, 2011 at 11:14 pm

      Where do you find out about the GF/CF diets?

  9. Pattie
    December 26, 2010 at 11:44 am

    Just be thankful for ALL their SMALL strides because for parents with children with Autisum there are no SMALL STIDES. They are all GREAT FEATS!!

  10. Meg Minchew
    December 31, 2010 at 10:12 am

    Take one day at a time. You are resposible for your happiness. Our children were sent to us to make us better. You never look at things quiet the same again. I appreciate the little things and learn from my boys. I have twins with autism that are nonverbal and you become much closer to them because you become mind readers. If everyone would tackle their goals with the persistence these children have –WOW what accomplishments they would see!

    • gail hughey
      February 7, 2011 at 7:51 pm

      how old are your twins ?? my son did’nt speak a word of english until he was 4yrs old

  11. sherry
    January 19, 2011 at 4:09 pm

    Over the years as the parent of a 19 year old, I have learned to never compare my childs setbacks or accomplishments with other children of Autism; this has allowed me to maintain a healthy outlook on my sons life. There is one rule that my son and I agreed on years ago…that is, he would always offer his best. Academically, I did not allow labels to hinder my expectations of the ‘possibilities’ nor would I allow his teachers to do so; we all worked collectively as a team to gain accomplishments both big and small. I am a proud mom and is hopelessly in love with my son and all he does.

  12. gail hughey
    February 7, 2011 at 7:44 pm

    there is always hope for your child. i never thought my son joey would ever be able to do much of anything by himself. my prayers were answered, he’s 16yrs old,goes to public school (10th grade), loves art & music. he has a sense of humor,& is on the A/B honor roll for his level. although he makes a lot of noise at home, i’m proud to be his mom. so all you parents that may get discouraged, remember how much your child loves you for being their parent. be strong !! gail

  13. Yvonne
    June 23, 2011 at 9:46 pm

    Let the brain rest a while. Open the heart and let the heart lead. Shine on!

  14. Rebecca
    September 24, 2011 at 9:21 am

    This is the most down to earth and true blog I’ve come across. My child was recently diagnosed and I’ve been trying to learn whatever I can to help her. Your blog was amazingly encouraging! Thanks so much!

  1. December 20, 2010 at 8:50 pm
  2. December 20, 2010 at 9:11 pm

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