Best ways to support friend whose child likely will be diagnosed with severe autism

[Anonymous]

A close friend revealed today that her preschooler will likely receive an autism diagnosis (he’s nonverbal and awaiting a formal diagnosis, but per her pediatrician, that’s the most likely dx).

I’m wondering if parents of autistic kids can tell me what was helpful from friends in the weeks, months and years after diagnosis. I want to say the right things and offer the most loving and helpful support I can. What helped you in the toddler/preschool years? What are useful things to say/do and what should I avoid saying/doing? I appreciate your help.

[Anonymous]

Be there for her, just listen. She will need to mourn a life she thought she would have.

A life lived differently, does not mean a life less loved.

If she wants, help calling providers, putting name on waiting lists. Research medical waivers/services from the state and county (many have long waiting lists).


Are you close enough to the child to provide her a break while you watch the child. It is hard to find respite for kids on the severe side of the spectrum. Or to trust anyone with child that can’t tell you what happened.

Are you able to make your home a space where child and mom can come safely? Depending on the behaviors, there will be very few places the family can visit and relax. Not have to shadow the child every second. This might mean locks on doors, breakable decorations put away, safety locks on medication and cleaning supplies.

The book “Forever Boy” is by a mom with a child diagnosed with severe, nonverbal autism. I recommend reading the book for anyone with a nonverbal child in their life.

[Anonymous]

Do not give her any information on autism that she did not specifically ask you for.

[Anonymous]

Different diagnosis, but I found telling people to be one of the most difficult parts. Several people said some hurtful things without thinking. Two comments that stand out in my mind are, “Really? You’re going to keep it?” (meaning my baby) and, “God did this to test you.” The people who were most helpful were those who listened and said things like, “Sounds like that is a lot to process. How are you feeling?”

Maybe ask whether your friend would like you to share this diagnosis with others or keep it to yourself. I found it helpful to have my parents tell extended family and friends, so that I didn’t have to share the diagnosis repeatedly and manage everyone’s initial reactions. Telling people in writing also helped. On the other hand, there is a fine line between supportive sharing and gossip. When in doubt, keep this information private.

[Anonymous]

I have a life long close friend that has a child with severe intellectual disabilities and medical needs. She shared with me many years ago me that it’s painful to hear about my child’s milestones or accomplishments so I only talk about my kids if she specifically asks and then I try to choose carefully the things I say. Mostly, I just listen. We live in different states but I did babysit a fair amount when he was younger to try to give her and her husband a break. But as her son has gotten older his needs are more complex.

[Anonymous]

Be understanding if she seemingly disappears from your life for long stretches. Reach out just to say periodically, but realize at some points she might be in survival mode.

Don’t be judgmental about the behavior of anyone’s kids or parenting in her hearing. (Anyone thoughtful enough to think through how to be a supportive friend is probably not doing this anyway.)

[Anonymous]

Continue to invite them as a family to things. We have almost no family friends because our friend's kids thought my daughter was "weird" and no effort was made to accommodate her.

[Anonymous]

Do nothing. Treat her as any other parent.

[Anonymous]

Don’t minimize her concerns or fears by making “look on the bright side” type of comments. She will get there on her own when she’s ready, but let her feel her current feelings of sadness and overwhelm and just validate those.

Also celebrate every single milestone with her as they won’t look anything like what other people celebrate and it’s so nice to have a friend who gets that.

[Anonymous]

Anonymous wrote:Do nothing. Treat her as any other parent.

Ok, let’s meet at the trampoline disco Game Center. So fun.

[Anonymous]

First, don’t make assumptions about the long term. How a kid presents and the support they need as a preschooler who has just been diagnosed doesn’t really correlate with how they will present or the support they will need down the road. So, stay focused on now and away from terms like “severe”.

Be her friend, continue to see her. Get to know her kid well enough that you can give her little breaks when you are together, and can be the person she calls to take him in an emergency. And celebrate him. Make sure you comment on the wonderful things about him, while also allowing her to grieve the loss of an easy path. Don’t try to convince her it’s all sunshine and rainbows.

[Anonymous]

Op here. Thanks for these tips. Her child is wonderful in so many ways. He doesn’t speak or babble, doesn’t point, wave, blow kisses or high five, etc., but he’s giggly, physically affectionate, silly and a total delight. I will
invite them to stuff with the caveat that there’s no pressure if it doesn’t work for them and I’ll also always show up when she invites me to stuff that works for her kid. Those are great tips. If there’s stuff I should read, let me know (though I agree that I should never tell her things like “I read that this random herb will solve all your problems!”). I want to educate myself but I will avoid ever thinking I can educate her (and she’s a bad ass who is fully on top of this, so it’d never occur to me to think I have more info that she does).

[Anonymous]

Don't say "I'm sorry to hear that". Ask her how she feels about getting the diagnosis.

[Anonymous]

Interact with her kid as much as you can like you would interact with any other kid. Demonstrate that you like her kid and appreciate his qualities.

I'm four years post-diagnosis with a kid who is profoundly disabled, and one of my all-consuming worries early on was that no one would like my kid. I hadn't had her baptized yet, and I remember worrying that none of my close friends/family members would want to be her godparents. It seems silly in retrospect, and I don't spend time worrying about it anymore, but I am still touched when other people demonstrate care for her. Recently, I was pushing her in her wheelchair in our town's 5K race, and I started crying just hearing people cheering for her by name. (And I'm crying right now just thinking about it.)

Thanks for putting so much thought into how to be a good friend.

[Anonymous]

Don’t jump to the conclusion that he’s severe just bc he’s non-verbal. My dd was non-verbal until 4/5 but that doesn’t mean she’s severe. It was and is frustrating when people say I’m sorry and assume she can’t do anything. Just because his expressive language isn’t apparent doesn’t mean his receptive language is delayed. Also don’t assume that where he is now is where he’ll be in a few years. My dd is now 6 and is somewhat verbal but a fluent reader and her receptive language is perfect. She has commented on things she has heard people say about her and burst into tears. It’s heart breaking bc people assume if someone isn’t conversational that they don’t understand and that’s often not the case.