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To the Family and Friends Who Disappeared After My Child's Autism Diagnosis

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What happens to friends and family when your child gets an autism diagnosis? Why do they not say anything or reach out? I’ve had some family members and friends not say a word to me.

I’m talking about the family we would see on a regular basis before the pandemic. This makes me very disappointed. It will be awkward when we do see them once we feel ready after COVID-19.

I know the pandemic has made it hard for us to connect. I also understand you have your own challenges and family to worry about — but know this, I would be there for you in a heartbeat if you needed a shoulder to cry on or someone to vent to. I never ask for help, hell I didn’t even ask for help after my two back surgeries recovering from a C-section with a newborn. I got through that on my own with the help of my wonderful parents.

Why is it when we endure some of our most difficult times, no one is there when we need them?

If your child received a life-changing diagnosis, I would text you and just let you know I’m there to support you. To me, it comes off as rude and cold not to say anything. My parents taught me differently, I guess.

Is it because I haven’t formally texted or called to say, “Rocco has been diagnosed with autism and apraxia?” Most family and friends already knew he was nonverbal and in speech therapy.

Our world has been turned upside and we are learning to adjust. We no longer feel like “other parents.” It has not changed who our son is — he is still sweet, smart, beautiful, well-behaved and a joy, but he has days that are hard like we all have.

It has changed who I am, I will no longer be the pushover people pleaser you once knew. That person does not exist anymore and I am so happy about that. It’s not about everyone else anymore, it’s about my son and my family.

It’s OK if you don’t know what to say; it’s OK to ask questions. But please do not give out unsolicited advice on things you know nothing about. Nothing makes me more furious inside when this happens! That’s not helpful. That will only cause resentment.

I’m not asking you to call me and pity me or feel sorry for me. I guess I just expected a “Hi, how are things, how is Rocco?”
Any effort shows me you care, even if it’s just responding to my social media posts about autism and acceptance. I often feel isolated and sad, but I won’t beg anyone to be in my life or my son’s life. If you’re not, it’s your loss.

Some family members and friends have reached out and it means so much. I know it can be awkward as you may not know what to say. You just taking that moment to reach out means everything.

Some have offered to watch my son, and while I really do appreciate your offer, I don’t feel comfortable with that. Right now, I don’t need a babysitter, I need support. Offering to watch my child isn’t going to “give me a break” because you’re not familiar with how autism and apraxia affect my child. You don’t know what can trigger him, you don’t know his sensory challenges, you don’t know what calms him, you don’t know sign language, you don’t know his sounds, his facial expressions or his words. Only I do. Even my husband who is amazing with our child doesn’t know what he is trying to communicate at times, and I have to interpret it. Leaving my nonverbal son with a family member or friend just isn’t realistic, and when they understand this, it will be a relief.

Supporting my son with autism takes a great amount of time and energy as a parent. This makes it hard to maintain friendships and keep up with extended family. I’m sorry if you can’t understand this. I’m truly sorry if I have been a bad friend or family member these days. If you knew how drastically things have changed, you would understand why.

I’m grateful for my mom and dad who have been beyond supportive and not once criticized or questioned the way we parent. They have been my biggest cheerleaders.

Supporting our son will always come before everything and everyone else. It will come before holiday parties, your friends’ night out, graduation parties, family functions etc. This isn’t to be hurtful — it’s our reality. If we do come, don’t give us grief when we need to leave because we have a routine. Routines are crucial for my son; when family invites us over for dinner at 6 p.m., that won’t work, as our son eats dinner at 4 p.m. and gets in the bath by 6 p.m. Just know things are different.

I read this quote and it really resonated with me. “There is a ‘get it’ factor in parenting kids with autism… Those who get it become part of your inner circle. Those who don’t are weeded out, often through no particular fault of their own.”

I need to find other people who get it. Connecting with other parents of kids with autism has been great. All of the parents we’ve spoken to have struggled with family and friends not reaching out to them. It’s a shame this happens. I still hope more loved ones will reconnect with us, but in the meantime, we as a family will move on and continue to focus on our magnificent son. New friendships and bonds will be made.

Originally published: July 6, 2021
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