10 Pieces of Advice for Newly Diagnosed Families

I’d like to offer some support to parents with kids who have recently been diagnosed with Autism. I’ve been there twice – it can be overwhelming. I won’t pretend to know your exact circumstances or feelings, but here is my “Top 10” advice of things I wish I heard (or did hear) that helped me. There could have been 101 or 10,000 things on this list, honestly, but Shamus tells me 10 is a psychologically satisfying number. This is also focused on younger kids because that’s what I’m familiar with.

First and foremost, and I’m not even counting this as one of my 10 because I think it is so important:

Remember that the child who walked out of that appointment is your same child just with a lot of extra support now. I say this all the time, and it’s possible that someone who hasn’t gone through this process won’t understand what I mean. For a while it felt like Autism was plastered across my kids’ foreheads and it was a label and labels can be terrifying. Try to remember that they are still your same kid and they are incredible.

1. Feel whatever you’re feeling

I went into both appointments for my kids pretty much knowing I was leaving with an Autism diagnosis. For Penny’s, I was nearly excited for them to say it after waiting so long and it still hit me like a ton of bricks. For me, I mourned a life I envisioned but would never have. I felt a lot of guilt about that. I felt guilt about totally loving my kids and still doing therapy because I felt I wasn’t accepting them as they were. I had a hard time being in the house when ABA therapy was happening even though they enjoyed it immensely. I felt absolutely helpless and overwhelmed and ill-equipped. I saw a psychologist (who is specific to autism parents) and it helped a lot. And honestly, it’s only been the last year or so where I feel pretty much okay again and feel like I have a handle on life. That’s not saying I have my shit together – I totally do not have my shit together – but I feel BETTER about not having my shit together.

2. Reach out to others

The best thing I ever did was going to a support group for Autism Parents. It took me forever to go after Penny was diagnosed – I’m talking 3 years and a second diagnosis later. I have super supportive family and friends and truly didn’t know what I was missing, but connecting with other parents has filled a void I didn’t know I had. There’s something special about people who can 100% “get it”. Also, no one gives better advice and offers less judgement than someone who has been there. If anyone ever wants to reach out to me, just send me a message, and if anyone in my area is freaked out about walking into a meeting by themselves where they know no one (been there) I will walk in with you. Also, if you’re in my area, if you contact the Autism Society they can connect you with other parents as well. I know of at least one of those parents and she is a wonderful human.

3. Ask for help

If you’re struggling, ask for help. Help from friends, family, a professional. It’s so easy to get overwhelmed by life and appointments and trying to process your emotions while looking after your kid. If you are having a hard time, ask for help – no one is judging. And if they are judging, they are not your people so ask somebody else.

4. Try not to do it all

I found when Penny was diagnosed in particular (because she is the oldest and the first with a diagnosis) I wanted to do it all. Full days of therapy? Start it now. Social activities? Yes. Preschool? Of course. Swimming? Definitely. Music therapy? Yep. We went to every thing and I attended every course offered and read every book until we were all exhausted. While there is a lot of value in that, there’s also burn out. It’s impossible to do it all, and it’s impossible to do it all yesterday. There’s a feeling of helplessness when your child is diagnosed (since you’ve likely waited months if not years for something to describe what you’re going through) you feel like you wasted all this time waiting, but you didn’t. This leads me to my next advice…

5. It’s not a race against Kindergarten

I felt I had to get in all of the therapy before Penny started Kindergarten. I was obsessed with making sure she had certain skills. Everything was a countdown to when she started school. Fun fact: school teaches them things also. ABA and Jasper has done amazing things for Penny, but school has done the same if not more, in my opinion. There is a huge push on early intervention right now and I feel like that adds to the stress. Early intervention is great, don’t get me wrong, but any intervention or learning at any age that works for your kid is better.

6. Appreciate your kids as they are

It can be really easy to get caught up in the next thing to “fix”, but your kid is amazing. Absolutely amazing. They are unique. They are smart. They can already do so much. Some days are hard. Sometimes there’s more hard days than manageable days, but appreciating the small things goes a long way. There is a unique set of challenges but there’s also a unique set of joys. Like, most parents get annoyed when their kid sings out to them after bed time – I cried with pure joy when Penny did it the other night because she had never done it in her 6 years on this earth. I love that Rory confuses kisses and hugs and kisses everybody goodbye. It blew my mind when I finally realized that it’s not that Penny doesn’t know how to socialize, it’s that she’s an introvert like me and doesn’t like large crowds. They are kids and they are learning and changing every day and they have their own personalities – it took me more time to fully appreciate that than I’d like to admit.

7. Try not to think too far ahead

It’s impossible to tell the future. I obsessed about school, speech, potty training (etc.) SO MUCH before we got there and caused myself an incredible amount of unnecessary stress. You can go down the rabbit hole it and sucks. I literally still catch myself obsessing about whether or not I’ll get to be a grandmother some day and my kids are only 4 and 6. Like, my kids could eventually be fully functioning adults living on their own with a spouse and decide they don’t want children too – I don’t even know why I go there.  Almost every day my kids surprise me by what they know and what they can do. Taking it one day and one success at a time is much more rewarding than freaking out about the future I can’t control.

8. Let your kid take the lead

This is the advice Shamus wanted to pass along. Essentially he means, your kid might not do everything you did growing up, but that doesn’t mean they can’t or won’t have a helluvalot of fun. Our kids struggle with loud noises so arcades are a bust, but sensory-friendly swimming and playgroups, and throwing rocks in the ocean for hours? Hell yes! And we enjoy (almost) every minute of it.

9. You’re never going to know it all

I’d like to think of myself as well versed in autism parenting. It’s not my first rodeo. However, as a hilarious meme I saw tells me, two rodeos is still not a lot of rodeos. I learn something new every day. The kids show me up all the time. I think I know them and they surprise me. I go to a lot of appointments, meetings, workshops, take online courses, and I am still winging it 99% of the time. So, while I do recommend learning as much as you can to understand your kid and help them learn, there’s no end to the wealth of knowledge so, rest assured you will know a lot but not all of it.

10. Try not to compare yourselves to others.

You’re on your own unique journey and your kid is their own unique individual. Comparing them to other kids, neurotypical or not, will kill you. I try to focus on the skills they’ve acquired themselves and not on those around them. This is why I sometimes struggle going to birthday parties and events with a lot of other children because it feels like we’re so far behind. There is so much joy in celebrating the little wins and the big wins no matter how long it takes to get there and what age they are.

I could probably write 1000 things about this topic, but I’ll leave it at this. Any autism parents have anything else they’d like to add? Anything you wish you knew sooner that you’d love to shove down someone’s throat too?

To parents of newly diagnosed kiddos – you’ll figure it out and you got this!