Parents are usually the first to notice the early signs or “red flags” of autism spectrum disorder. Maybe it was something different they noticed about their child at birthday party, or the child not developing like a sibling. What was the experience that led you to seek professional advice for your child?
How did you feel when you or your child received an autism diagnosis? What were your initial steps? What advice would you share with someone who has been recently diagnosed?
The Autism Speaks 100 Day Kit and the Asperger Syndrome and High Functioning Autism Tool Kit were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.
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
This “In Their Own Words” essay was written by Matt Rizzo, of Creve Coeur, Mo., who has a son with autism.
I will never forget the day. While the details escape me, the day will live on. Was it sunny? Was it raining? Maybe it was overcast. All I remember is how I felt. I was insanely nervous. I was dreading the appointment. It was a day that we had been building up to for the better part of a year. My wife and I were going to a neurologist to see if our son, Gabe, had autism.
For about a year we had been noticing that Gabe was missing developmental milestones. He was always on the low end of “normal.” His ability to interact appropriately with other kids of his age was drastically deficient. He began repetitive behaviors such as running back and forth, crashing into walls, spinning in circles, etc. So I did what any self-respecting father would do. I got on WebMD. (Sidenote: don’t look at WebMD. You will always end up with terminal cancer.) The good doctor told me what I had been fearing. Gabe had autism. But this was just the web talking. There were other signs of “normalcy” that I chose to cling to. Maybe this was just a phase. Then came the moaning and the lack of speech. He had a 40-word vocabulary, but chose to not use it. Instead he would spend the day moaning. We knew something was not right. We finally made an appointment with a neurologist to see if we had a true case of autism or if we were just being paranoid.
I remember getting to the doctor’s office and sitting in the waiting room. Gabe was restless as usual and wanted to run back and forth, so we let him. I was trying to stay calm. After all, for the last six months I had been looking at WebMD and was aware of what autism was, but not what it really meant. I knew that the disorder entailed social difficulties; I knew that speech was sometimes difficult. I knew some of these people were insanely intelligent and incredibly talented, but I did not know what that looked like or felt like.
We were shuffled into the office and Gabe played with some toys. The doctor began asking my wife and I standard questions. We answered with as much detail as we could and explained why we thought one thing or another. In retrospect, we were probably shading the answers in such a way that would make Gabe appear more “normal” than he actually was. After about 20 minutes of answering questions, the neurologist observed Gabe playing for about five minutes. It seemed much longer than that as we simply sat back and watched as well. The doctor then stopped and asked if we had any questions for him. I remember thinking to myself “Yeah, man, what’s up with my kid?” Fortunately, I allowed my filter to kick in and instead asked “What are your thoughts?” His response, “Oh, it’s autism”.
Three words I will never get out of my head until the day I die.
In that one moment my entire life changed. I was speechless. I have only found myself in that condition a few times in my life. I truly could not come up with words. I remember looking out the window wondering what all this meant. My wife began asking questions of the doctor and he promptly began surfing the web to print out resources for us. I felt like an airplane just landed on me. We left the doctor’s office with more questions than answers. These questions still keep me up at night. Will Gabe have friends? Will Gabe need assistance in living his adult life? Will Gabe be living with me and my wife ’til we die? Who will take care of him after we’re gone?
In the last year, those questions have been removed from the front of my mind, but they will always be there. Instead, we have learned to take each day one step at a time. There is so much we don’t know, so instead we focus on what we do know. We know that Gabe has made huge strides in the last year. Instead of moaning, Gabe tells us what he wants now. He is starting to mimic “normal” behavior. We know that Gabe is the hardest worker in the house. Gabe goes to school for eight hours a day, including therapy. He is not yet four years old. We know that Gabe has a big sister who doubles as a full-time therapist and gives more to her little brother than any six-year-old child should ever be asked to, and she does it with a smile. We know that we will always be Gabe’s voice when he does not have the ability to show the world his. Outside of this, we let each day happen and react to it as best we can.
April 14, 2009 was the darkest day of my entire life. But from that darkness came an understanding of who Gabe is. Until that time, I did not know how to build a relationship with my son. Having him diagnosed opened up a world to us that allowed us to shine light into the unlit corners of Gabe’s mind. Doing so has allowed me to finally connect with my son. He loves music. Every night, Gabe allows me to fulfill my childhood dreams of being a rock star when I play guitar for him while he takes a bath. He makes me proud every time he tackles me and punctuates it with a “Go Steelers!” He warms my wife’s heart when he is going to bed, hugs her, smiles and says “happy.” It was the worst day of my life, but my family was made better for it. My family has united around Gabe. We don’t kid ourselves and we don’t set expectations. We don’t ever think he will be “normal”, and honestly, I am not sure I would want Gabe to be anyone else other than who he is. He is our “Buddy” and we like him just the way he is.
“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.
When a child is diagnosed with autism, his or her parents are often left feeling overwhelmed and confused about what to do next and where to turn for help. Autism Speaks’ 100 Day Kit is a valuable tool for these families and helps make the first few weeks and months after diagnosis a little less daunting. In order to defray the cost of the 100 Day Kit and provide it to newly diagnosed families, we need your support. Each kit costs $25 to produce.
Please support this very important initiative, which directly assists families affected by autism NOW.
- Make a gift of $25 to provide a “100 Day Kit” which will aid a newly diagnosed family today
- Join the Official Autism Speaks Cause on Facebook
- Use your Facebook status to ask your friends to donate to this project and spread the word
The 100 Day Kit includes information about autism and dealing with the news of a diagnosis. The personalized kit lists local service providers, support groups, recreational activities, sources of legal information, conferences, local autism organizations and information about the local chapter of Autism Speaks. It provides insight into getting services for a newly diagnosed child and explains various available treatment options. A week-by-week action plan helps walk a family through the steps they need to take to ensure that they are on the right track. The kit also includes a safety plan and a list of recommended books and informational websites. In March, Autism Speaks launched a separate Asperger Syndrome and High Functioning Autism Tool Kit.
Families whose children have been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit or the AS/HFA Tool Kit by calling 888-AUTISM2 (888-288-4762) and speaking with an Autism Response Team Coordinator.
Every 20 minutes, a child is diagnosed with autism. When families first get the diagnosis of autism, it can be difficult. Our hope is that the “100 Day Kit” will provide families with a greater sense of hope, with resources, and information that will help make those first few months just a little bit easier.
Thank you from the bottom of our hearts for your continued support.
Recently, we asked our Facebook community, “What books about autism do you think are most helpful for newly diagnosed families?” We received nearly 300 responses. Below are some that we chose to pass along to you.
- Sherri suggested “the new one by Tony Atwood (The Complete Guide to Asperger’s Syndrome). My son is newly diagnosed at 20. My husband and family have found it very helpful.”
- Geri said “The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder is very informative … I would highly recommend it.”
- Laurel’s favorites are “Thinking In Pictures by Temple Grandin, Born on a Blue Day by Daniel Tammet and, my current top pick, Toilet Training for Individuals With Autism or Other Developmental Issues by Maria Wheeler, M.ED.”
- Martha thinks “a good one for young kids who have Asperger’s Syndrome is All Cats Have Asperger Syndrome by Kathy Hoopmann.”
- Patty really likes the book There’s a Boy in Here by Judy Barron and Sean Barron. “It really helped me to understand my son. Sean Barron is actually the child who has autism in this book and he remembers all of his behaviors from when he was about three years old and on and explains why he did the things he did.”
- Dan recommends Fred R. Volkmar’s latest book, A Practical Guide to Autism: What Every Parent, Family Member, and Teacher Needs to Know.
- Christina praises Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. “It has explained more in the 72 pages I have read than every professional has in the last six months.”
- Alischa agrees that “Louder Than Words by Jenny McCarthy really helped, especially the ‘non-accepting daddy’ part. It was reassuring that it (autism) happens to everyone, not just ‘us common folk’.”
- Shelley believes “there are a lot of great amazing books to get you started. I think I started with Let Me Hear Your Voice. Lee Ann Whiffen has an amazing book – A Child’s Journey Out of Autism. My advice to new parents is read everything you can get your hands on because knowledge is power. But one of my favorite books ever written on autism is by Portia Iverson – Strange Son. It’s brilliant.”
- Judith agrees with many members of our community. “Especially for the initial months, Overcoming Autism: Finding the Answers, Strategies, and Hope That Can Transform a Child’s Life by Lynn Koegel. I call it my bible, and constantly refer back to it. The understanding it gave me for getting through the beginning was priceless; I would recommend this book immensely. It speaks plenty on recovery and overcoming symptoms, and how to achieve the victories.”
For a longer list of books, visit the Resource Library on autismspeaks.org