42 Things Parents of Kids With Autism Would Tell Parents Who Just Got the Diagnosis
Your child has just been diagnosed with autism.
You, the person who loves that child most, are probably feeling a lot of things right now.
Maybe you don’t know what to expect, and maybe that scares you. You’ve talked to doctors and therapists and loved ones, and they all have a lot to say. You’ve Googled and Googled and Googled. But have you talked to other parents who have been in a similar position? That’s where we come in.
We asked our readers who have a child with autism spectrum disorder (ASD) to share one thing they’d tell a parent who’s just received the diagnosis. Of course, every child and experience is different, but we hope something below resonates with you.
Here’s what they told us:
1. “Getting a diagnosis does not change your child. Your child has always had autism, but you just got the name for what’s been going on. I was so scared of that diagnosis until I realized it changes absolutely nothing about who my child is and will be.” — Emily Matejic Souders
2. “There is nothing ‘wrong’ with your child; his brain is only wired differently. You will be his best advocate in all things!” — Jodi Shenal
3. “Take a moment to take it in and express whatever emotions you feel; it’s OK and doesn’t make you a bad parent if you feel devastated by the diagnosis. That will soon pass as you educate yourself as much as possible. Surround yourself with other autism families; they will be your best friends and a kind of therapy for yourself — they get it. Access whatever supports are available for your child that you feel will help. And know your child will completely change the way you view the world and make you a more compassionate, kind person. Celebrate every milestone and never give up hope. Encourage your child, and they will amaze you. Some days will be hard and other days will be triumphant; you will all be OK.” — Kim Hall
4. “Just like with neurotypical children, no two [children with autism] are the same. Take it one day at a time. I know it seems daunting, but it’s a beautiful ride.” — Sam Thayer
5. “Believe in your child and believe in yourself. Use your resources… Remind yourself often that you’re a good mom/dad and you know your child best.” — Katie Ortiz
6. “Just remember to go with what works for you and your child. Other people may not understand, but that’s OK; they don’t need to.” — Rebecca Engelmann
7. “You are the one who will make the biggest difference. Educate yourself and don’t let anyone limit what your child can accomplish.” — Susan Rood
8. “It doesn’t change the love you have for your child. It won’t stop them from achieving in life, but the journey might be a little difference. Embrace your child and try to enter their world.” — Gemma Lyons
9. “Get to know what supports and services are available in your area. Find someone who has been on this journey to talk to. Don’t be afraid to ask questions; ask for help… Remember to take care of yourself.” — Tricia Brown
10. “Focus more on bringing out the good in them… Most ‘bad’ behaviors are ways of them expressing and speaking to you. Just look and listen. Also join support groups because you’re not alone in this.” — Barbie Rivera
11. “A diagnosis doesn’t change your child; it just gives you more of a window to understand them.” — Cassandra Coogan
12. “Just because the words coming out of your child’s mouth don’t necessarily make much sense to you doesn’t mean they aren’t meaningful for your child.” — Cheryl Soltero Egher
13. “No two children are alike, but many parents feel the same. We understand, and sometimes friends and family won’t, but that’s OK; you can ease them in. You’re the only expert on your child.” — Ronda Landes
14. “Take time to wrap your head around the diagnosis. Then, when you’ve come to terms with it… read, read, read. Do all the research you can.” — Theresa Beaudry
15. “Embrace this journey; shed tears, be mad, get frustrated… but above it all, learn to embrace. Learn and always love.” — JoJo Agnello
16. “Talk to someone who has started this journey before you. It’s OK to take notes, it’s OK to ask the same questions over and over until you understand.” — Michelle Oldenburg Fong
17. “Take it slowly, go at their pace… Remember, if they feel loved and understood, they will be more able to understand the world around them… Remember you are an amazing, loving parent trying your best, so give yourself a break. Start each day with a new start. Love each other.” — Emma Elizabeth Sobey
18. “You know your child better than anyone. Trust your instincts. Do the research, but also listen to that little voice inside. And then make the [teacher/therapist/administrator/doctor/specialist] listen to it too. That’s how you will find your tribe, build your team and help your child.” — Chris Stormborn Krasovich
19. “They will always be your baby, and a diagnosis is only there to get them the help they need. It doesn’t change who they are.” — Leidy Jesse Garcia
20. “There is so much hope for your child.” — Meg Naughton
21. “Welcome to the tribe! You are not alone in your fear, sadness, confusion or worries about where your child will fit into this world. Those of us who have journeyed for days, months or years have had or still have those days. Reach out to your community, find local Special Olympics groups and take pride in every accomplishment, no matter how small it may seem to others. You are your child’s best advocate and cheerleader; you got this!” — Sarah DeMartino
22. “Life isn’t over; in fact, you’ve been given a key to slowly unlock his/her potential. Take care of today, and don’t worry about tomorrow. It will wait until you get there. Just keep loving your special one.” — Tabitha Truchon
23. “Educate yourself. Do the work. Together. This is a journey you have to embark on as a family with your child. All of you will learn and grow in ways you never imagined.” — Georgina L. Acuna
24. “Don’t let anyone dictate how you should feel. Don’t let anyone tell you you shouldn’t hurt. What you feel is what you feel. Honor your heart.” — Laurie Fiander Juarez
25. “You got this!” — Melissa Cote
26. “You’re about to learn a whole new language, and even though it will be hard sometimes, there’s lots of help for you. Let me give you a hug because it’s going to be OK.” — Ann Jamison
27. “Remember that a diagnosis is a starting point. You will have peaks and valleys, just like you would with any other child. The diagnosis changes how you can help your child; it doesn’t change your child.” — Lisa Kasprzak Smith
28. “Don’t be nervous. People are going to say things that are rude and disrespectful; ignore that.” — Tami Birk
29. “He may not hit his milestones on time or at all, but when he hits his own personal milestones, it makes it all the more exciting.” — Kimberly Petroni
30. “Adjust your expectations — not of your child, but of yourself.” — Meredith Smolen
31. “Look for the cues your child is giving you. It’s a puzzle, but there are clues and you don’t have to figure it out alone. There are so many great people out there who can help you. You also don’t have to immediately go do every [therapy] out there. One thing at a time works, too.” — Carrie Mamantov
32. “Discover and nurture their strengths.” — Sally Meadows
33. “Breathe and enlist help.” — Katie McCabe
34. “It is OK if you feel sad right now; in time, this will pass.” — Miriam Gwynne
35. “If someone tells you to mourn and that doesn’t sit right with you, tune them out.” — Amy Hunt
36. “It’s going to be OK.” — Kelly Renee Smith
37. “It is easy to be in denial, but all it does is hurt your child. Accepting it is hard at first, but once you do you can move toward getting the help your child needs.” — Kim Nguyen
38. “Don’t compare… Don’t compare your child to other kids on or off the spectrum. I know you want to know what your child’s life will be like, but comparing won’t tell you. Don’t compare your reactions and feelings to the reactions of your partner, your parents, other random autism parents on the Internet, anyone. Your child, your life, your feelings are wonderful, worthy and valid.” — Jessica Charlton
39. “Reach out. To your family, your friends, local ASD support groups for parents. The best thing you can do is to bolster your support system. You will need them.” — Elizabeth Campbell
40. “Never listen to anyone who puts limits on your child… ever.” — Sara Coats-Kimbrell
41. “Always presume competence… Teach your child we all have strengths and weaknesses, and sometimes we need a little more assistance… Surround yourself with others who unconditionally accept and support you… Dream big and shoot for the moon with unconditional love, and you will be amazed at how far they and you will go.” — Sara Young Spoerl
42. “Congratulations! You’re in for a wonderful ride. It’s going to be bumpy, so hold on tight, but you’re going to be amazed at the different perspective your child will open your eyes to.” — Christian Osborn
We wanted to end on this note:
43. “I’m autistic and I don’t have kids, but I would like to say something: don’t be sad, don’t think this is the end, don’t treat us like a disease, don’t search for a cure: just love and accept us. It’ll be hard sometimes so be strong, but in the end, it’s worth it.” — Arianna Nyswonger
What’s one thing you’d tell a parent whose child just got an autism diagnosis? Let us know in the comments below.