I have something important to tell you. It’s as raw and honest as I’ve ever been pushing me out of my comfort zone but I feel I owe you this. You may already know the wisdom I am about to impart because I think autism moms today are much better equipped than the moms of the 90’s. You have so many more resources to tap into. There are countless blogs to read and many support groups to join. You can ask questions to other moms in real time via social media during a crisis and get the support and affirmation you desperately need . How awesome. In many ways you are ahead of me in knowledge. You will make sure your child’s transition program is the best it can be and you will start ABA therapy stat! Your pediatrician won’t tell you to be patient as you start seeing unusual behaviors that make you anxious without you knowing exactly why. You won’t try to hide the scary diagnosis from others and think you can “fix” things yourself. Thankfully you won’t have to explain to others what “high functioning” autism is because with decades of awareness efforts people know!! That’s huge. Speaking from experience, explaining to others what you don’t understand yourself is exhausting. And ….. I almost forgot ……… don’t get discouraged when your parenting is called into question time and time again. I know questions about my parenting skills were in the minds of many around me during my first years as an autism mom and I let it effect me too deeply. You, young mom, will start therapy for your child early……..I know you will. You are packed with knowledge and will learn so much more by experience.

Once you come to terms with the new diagnosis my guess is you will dig deep and dig in. You will become committed, maybe even obsessed, with securing services for your struggling child. You will most likely be told there is a waiting list and you will grow frustrated. But what I want to strongly suggest is that you think about securing some services for yourself. Seriously. You may not even know it now but eventually the emotional repercussions of taking on this different life catches up to you and you find yourself alone. I even saw it coming but didn’t have the energy to change it. After all, your child was not the only person to receive a diagnosis that day. You did too and it took me until now to realize this. You became an autism mom with the stroke of a pen and that title carries a lot of baggage. And I know with certainty that’s not the diagnosis you want. The future as you imagined for your family is gone just like that. It’s harsh. It’s cold. And missing is the cheering section and community outreach and respect that other childhood diagnosis receive.

For me, I’ve experienced autism twice in both my sons. My first son is higher functioning than my second. In some ways the higher functioning situation is almost harder. A boy longing for friends and wanting so much to fit in but does not. Fully aware of what he is missing and there is nothing you can do about it. Watching that day after day and year after year slowly changes a person. Or at least it did me. I am at peace (at least I tell myself I am) but Good God the stages I have gone through to get where I am today were back breaking. I find the stages repeat themselves too making your life an endless cycle of emotions. Depression tends to weave in and out of my life like happiness does. Sometimes I’m not sure what emotion is going to greet me in the morning. Anxiety is now a part of my personality and self doubt haunts me. Perhaps the worst though is the bone crushing exhaustion. Two decades of managing an existence that takes you away from people, not closer, has made exhaustion, both physical and mental, an unwanted but constant part of my life. It makes me not care if I’m missing something, something I used to care about very much. Over the years I have declined many invitations. Not because I wanted to but because the mental exhaustion made me feel like my head wasn’t in the game making it hard to socialize and contribute. Feeling safer at home because putting on my game face felt impossible. Fitting in used to be my worry but that seems trite now. Eventually, you know you don’t fit in and you just don’t care. The worry now, for me in my 50’s, is how my sons’ lives will work without me. That thought weighs in the back of my brain all the time.

I share this with you, young mom, not to scare you and definitely not to conjure up pity. Pity is not what we want. I would never want to do that because I know how much fear you are living with. I am on your side and am your greatest fan. I share this with you to encourage you. I really, really encourage you. Please get somebody in your life that is capable of going the distance and gives you grace when you need it. A doctor, a therapist, even a former teacher of your child. I don’t know. You will need some help working through your emotions. You will need coping strategies. I didn’t see the importance in this before but I was mistaken because this life takes an indescribable toll on your mental and physical health and just like that you hit a wall. Don’t worry…..I WILL find a way to climb over the wall. I’m pretty strong now. I’m trying to save you this hurdle in your future because God knows you have enough hurdles.

The symbol for autism is a puzzle piece. I feel my life as an autism mom is captured by that symbol. My life is a puzzle that I am constantly trying to put together but there are always a few missing pieces. I don’t know where I belong and I don’t know how to figure it out. Seeking professional help to work through my emotions would have been such a positive outlet and if I could go back in time I would seek that help for my younger self. I deserved that. Back then I didn’t appreciate how important it was to manage my own mental health. And I don’t want today’s autism moms to make the same mistake. I want the next generation of autism moms to have all the pieces necessary to complete their own personal puzzle created by autism so you can live the most fulfilling life possible.

You got this young moms. I know you do. And I’m here for you. 🙂