Then vs. Now
This is the concluding segment in a series where family members of children and teens on the autism spectrum reflect on the day they first learned about the diagnosis.
Diagnosis day often results in a marathon session of searching keywords online and reading any and every link available. However, as mentioned last time, people often end up with a profoundly different view of autism than the one they initially held.
With this in mind, I took to the Invisible Strings Twitter and Facebook page to ask parents and family members a question about this experience.
Click here to see Part 1 and the first group of answers; the rest follow.
The question: if you could go back in time to the day the diagnosis was given, what would you say to yourself?
Cindy– I knew it! Ok, let’s get this party started!
Helen– Diagnosis day is so insignificant in the great scheme of things. Save your strength (& tears of frustration) for the battles ahead-these are the dates that will, truly, matter. Diagnosis doesn’t mean people will suddenly be any more educated about your sons conditions-that’s where the real hard work begins!
Jeanie– My response? “He’s the same child he was when you walked through that door. You will figure this journey out together. Don’t worry; you’ve got this.”
Stacey– 5 years post ADHD diagnosis. 18 months past Aspie diagnosis, 12 months past PDD-NOS diagnosis. Looking back, I would say “Go ahead and mourn normal, then try to get past the fear. In a few years social media is going to explode. Virtual communities are going to give you tools, ideas and outlets. Make sure you search out those that are non-judgmental. You’re a smart cookie and you can do this. Oh yeah, and the NT older sibling is going to learn acceptance and empathy.”
Cynthia– You may think your son is losing something because he is autistic, but just wait until you discover all that he (and you) have gained.
Anon.– This is NOT the end of the world. Find the autistic advocates NOW and runaway fast from the negative parents. Listening to them will only keep you down. Let your child show you what she needs instead of listening to the ‘experts’. As soon as you do that the headbanging will stop and you’ll realize you’re on the right track.
Mara– It’s been almost 3 years since our daughter’s diagnosis day. She is about to turn 6. I would tell myself this is a beginning not an end. It is a birth or rebirth you could say not a death. A beginning to a new life of hope, help, better understanding and answers. Doors have opened to new people, experiences and better opportunities to give her what she needs to feel successful.
“On the train with Sophie”– When Sophie was diagnosed I wish someone said- remember she is still your baby, not some “autism project”. So much focus was put on what “to do” now. I wish people instead said “just keep doing what you were doing”. Maybe try a bit of this therapy or that. I wish words like “intensive intervention” were taken away, as far as toddlers are concerned. If you wouldn’t do it to your other babies, don’t do it to your autistic baby. Follow your child’s lead- don’t fight them, gently guide them. If they’re not ready for something take a step back. Try again in a little while. It’s not a race. There’s no “magic window”. If anything the kids need MORE time. Think of a long haul, not fast. Of course-disclaimer- it’s only my personal opinion.
Krista– We are currently in the process of receiving a diagnosis… My son is 13…I tell myself everyday that it’s ok and forgive myself for not pursuing a diagnosis sooner… We are finding wonderful support and therapies and although it’s hard it’s getting easier every day
Shiela– I would have to go back to way before the official diagnosis, to when I had learned enough about Autism to realize that it had come to our house for good. I would tell myself, “Okay Grandma, take a deep breath and let it out slowly. Our girl has not changed, we just have more information with which to understand her. And yes, information is good, but be wary of it too. People are going to come at you with all sorts of nonsense (disguised as sympathy) about hopelessness and others will come at you with all sorts of nonsense (disguised as helpfulness) about cures, and it will be confusing and frustrating as all %#&@, but you will be okay. You will be okay, in part because you have a strong connection with your granddaughter and you see her as the funny, happy kid that she is, even when she is about ready to bounce out of her own skin. You will keep reading and reaching for credible, helpful and relevant information. You and your daughter will find a community of people who understand how to help your granddaughter learn, people who understand how to break things down for her and about her sensory needs, and who just really like her for her own self. It gets better though, it gets WAY better. You don’t know this yet, but you will also find a community of autistic people who have found their voices and who are willing to share their experiences with others. This will give you a lot of information, but the best thing it will give you is hope. You will do your best, and you will mess up, but you will keep on trying to understand and relate and just be there and you will be one of the people in this world that our girl knows she can count on. She will remind you not to sing, and she will tolerate a few too many kisses, and she will grow more and more into her own self and you will learn to see her unique skills and strengths that are right there alongside her challenges, and you will celebrate her every success with so much joy.
Darcy– I’d tell myself to hang in there, it will be more than worth it. I’d tell him… Give me your best (which he did) cause by the time we figure it out you’ll be a superstar. So proud of my smarty pants.
Lisa– The brain is elastic and has limitless potential. The most important thing is to really get to know and love this child. The child you have, not the one you imagined. Then, with the right help, anything is possible.
Sonia– “Your job as a parent is to love your child.”
Lori– I was thrilled, frankly; we’d worked for almost six years to get someone to recognize what was going on and give my son the diagnosis that would enable us to fight for adequate supports in school. So I’m a bit of an outlier there.
Jessie– A diagnosis doesn’t change who she is. She is the same child she was last month and nothing is certain. There is no miracle cure so don’t kill yourself researching for it. She doesn’t need to be “cured”.
Lia– He is more than a word, so don’t let the fear make you miss his stunning contributions. And trust that people like him for who he is.
Karen– I would say to myself: ok, take a breather. It’s going to be a pretty tough slog up this mountain, but the view when you get there will look bloody amazing.
One thing I am learning as I read and listen to personal stories from others: we experience our lives as individuals…but we make sense of our experiences as a community. Thanks to all for their insights and honesty, it adds so much to the ongoing discuss about these issues.