Advice to parents after an autism diagnosis

Twins, one with ASD

Parents occasionally write to tell me their child was just diagnosed with autism, and in searching the Web for insights they found my blog. They often express fear and sometimes sorrow, and ask if I have any advice.

Since this has happened more than a few times, I thought I’d compile some of the thoughts I’ve shared with these parents over the past few years into one list, in no particular order:

  • An autism diagnosis is just a label; nothing about your child has changed. The upside of the diagnosis, on the other hand, is that it allows your child to get critical services and support.
  • It might feel unfair that your child was diagnosed with autism at such a young age, but remember that early intervention is critical — and the earlier, the better.
  • Try not to panic, or feel like you have to fix things right away. This is a lifelong journey, and progress will happen over time just as it does for any child.
  • Though some people feel ashamed of their child’s autism, this is one of the most damaging things you can do to yourself and your child. There is no reason to be ashamed: your child has a different neurology, nothing more, nothing less.
  • Although it’s not uncommon to want to find someone to blame, don’t do it. No one is to blame. In particular, don’t blame your partner. You need to support one another now more than ever.
  • Autism is diagnosed by a cluster of similar symptoms, but no two people with autism are alike. Evidence-based treatments involve working on specific challenges, not eradicating autism. Try to move beyond the label and focus on your child’s unique challenges and, more importantly, strengths.
  • Beware of anyone offering a cure or recovery; there is no scientific basis for any of these so-called remedies, and some of them are downright dangerous. They are offered by people who — as kind, supportive and legitimate as they may seem — are either grossly misinformed or simply want your money.
  • Don’t buy into the myth that people with autism are “locked away” or otherwise disconnected. Outward appearances can be deceptive; if you truly want to get to know your child, you’ll find they’re just as present as any other child. Seek out their interests and make them part of your play routine.
  • Embrace — don’t extinguish — the obsessions. They provide a great way to connect with what interests your child.
  • Presume competence. Your child will amaze you with their abilities if you don’t assume they’re incompetent. In fact, nudge them (with love and patience) — just as you would any child — to do challenging things, things that may push their limits. This is how all people grow regardless of their neurology.
  • Embrace the atypical. We like to say that we value diversity and individuality, but when it comes right down to it, there’s an overwhelming parental urge to make sure your child “fits in.” Over time, you’ll come to understand that fitting in is a lot less important than being happy.
  • Some friends and family will evaporate. There’s no single reason why this happens, but some of the people you think you can rely on most simply won’t be there. Try not to waste your time and energy fretting over it. New, wonderful people will enter your lives, and some of the old ones may eventually get with the program as well.
  • Try to get to know teens and adults who have autism. Read their blogs and books, watch their videos, connect with them in person. They will help you gain insights you cannot possibly imagine now.
  • Parenting will not be what you imagined; it will be harder than you’d hoped. Try to let go of your expectations and live in the present. In time you may come to find great purpose in this experience. I personally cannot imagine my life, or my son, without autism.

Most of all, remember that your love and acceptance for your child is what matters most.

If you like this, please consider sharing it with others. Thank you for reading.

10 Comments

  1. I wrote a 15 page booklet entitled “Rescued…a story of hope & help for parents of children with autism” Roberta Gore on Amazon…download only 99 cents…what helped and didn’t…and things to do.

  2. Lovely to read this. There was so little around when my son was diagnosed in 1997. I shall definitely keep it handy for any parents in the same boat. Thank you ASD DAD

  3. As someone who was not diagnosed until the age of 31 I am absolutely certain that an early diagnosis is best – even at the age I was diagnosed having a recognised condition opened doors for me that were previously closed.

  4. My daughter was diagnosed at 18 just last year – it has taken me a year to accumulate the list that you have above – but I would write exactly what you have, it is spot on – thank you, I will be using it to help others. Her diagnosis answered SO many questions we have lived with for so long. We were both (all) grateful for it. She presents so differently than anyone we’ve known, but now that we know we will be able to help others who have daughters like mine. She is spectacular and I adore her, wouldn’t trade one minute for what others would call normal.

  5. Your advice and insight are spot on; your words are sprinkled with sensitivity, strength and wisdom. Thank you, thank you!

  6. always wise. candid, and concise. I am so glad that you are on this journey with us and for your sharing insights

  7. This is just right. Thank you so much. I will be sending this to friends and family even though our son was diagnosed over a year ago. I do wish you’d write one for that purpose too. A kind of ASD cheat sheet for new babysitters, instructors, family, friends, etc. I give out ‘Ten Things’ from the Autism Speaks site, but I bet you could write a much better one.

  8. Thank you for everything you wrote. It help me be strong.
    I’m feeling much better after crying for days . My 34 month old daughter has autism. Very hard to accept. Thank you again.