Your autism journey is starting now. You’ve received the autism diagnosis and are probably relieved, confused, distraught, angry or a combination of them all. Fact is that you probably thought something was going on and now have medical validation for your child. You are not crazy.
What you are about to go on is an autism journey. There is no simple and defined set path. You will vear off-road at times and there is no speed limit. You’ll for sure see, read and hear a number of things that is supposed to “help” your child.
The Autism Journey Warning
As a parent you have lost your right to die. That’s my tagline, one of them at least. I can no longer jump out of a plane, ride the baja in the back of a pickup truck or explore deep, dark caves underwater. If I put myself in a place with the heightened sense of danger and potentially financial hardship for my family- this is not good.
The autism journey is a long road full of twists and turns. While there are spoken destinations and at times you can see the horizon you will never really know where they take you.
This autism journey warning is to stay away from addictive habits. Yes, it is time to stop smoking, quit drinking, vacate the drugs and for a bit I’d recommend to chill on all the extra circular activities. Get focused on a foundation and path for your child’s care and treatment then decide on how to take some time for yourself. Drinking in excess can be fun, getting high could be a real relaxer for you too. The potential downfalls like a hangover, a DUI or extra aggravation from the wife / partner for doing so are so easy to avoid right now. Table it, shelf it and plan for some time in the near future. Your kid needs you dad.
The autism journey warning I have is for you to go slow and listen first. You will be tempted to try everything, and of course when you are drowning anyone with an extended hand looks like a savior. You need to know the difference.
My autism journey warning is to look at offerings and solutions at face value. There is no miracle cure, you will not fix your child overnight, or in a month or a year. They need to grow and you need to provide the proper support for them to do this properly.
The autism journey warning is to inform you that you cannot do everything today and that it’s ok. You need sleep, you need to make decisions with strong mental capacity back by more information than feeling.
The autism journey warning is to realize that not everyone understand what autism is. Some cultures still refer to “them” as “retarded” or “disabled” and “evil”. They are shunned from the family in some cultures and shipped off to “special places” or “communes” for those not like the rest of us normal people. Yes, get ready for this kind of mentality because it’s still out there to some degree.
A father’s autism journey warning is that you dad, needs to stay strong. You will feel immense pressure and have a tremendous amount of guilt. Your child needs you now more than ever and will for the rest of your life. Dad, you need to grieve and get on with it. You need to support the family, your ASD child, any siblings and especially your wife or partner.
My autism journey warning is to inform you that countless hours on the internet and on social media networks can be deadly. When not vetted properly the information you read could be wrong, misguided or have a particular agenda behind it. You also need to know when to stop and get some sleep.
Your autism journey warning is to now accept that family, friends and many in the general public will annoy the fuck out of you. They will not know how to act and will say stupid shit. They will make comments and brush off how you will be feeling or act like your child’s autism is no more than the common cold. You will need to learn where your happy place is and the warpspeed route to get there at any time because you will be frequenting this place from now on.
The autism journey warning includes to avoid all needy people and attention whores. Those family, friends and activities that suck your energy and attention away from your child need to go. If it’s family then tell them politely that you need some space and will be in touch soon; it’s you not them (but it is really the avoidance of them). If friends are too needy or just a fucking pain in the ass, drama queens or stupid you can now easily move on and silently wish them the best. You have no more time or energy for them to suck out. Your child needs it all now papa.
Professionals & Family & Friends & Ya, Autism Parents
In the beginning of your autism journey you’ll encounter a number of family, friends and professionals who’ll provide a ton of advice. This is both good and bad.
Opinions are like assholes, everyone has one. Some clean, some dirty and some with purpose. What? -I think you get it.
You will come across a lot of professionals and soon will learn to refine what I call your “ShitCare Detector.” The ShitCare detector is the ability to quickly sense of the medical or self-proclaimed professional you are speaking to and if they actually give a shot and care about your child’s unique situation.
- knows a bit about autism spectrum disorders
- appears knowledgeable in their approach with your child as a individual
- knows enough and wants to understand your child’s specific needs relating to autism diagnosis and specific conditions
- has interesting feedback to provide you and a potential path to find out more information
- appears to care (they are becoming more rare), actually shows empathy
- wants to listen and engage in conversation with you
- wants to follow-through with helping you and your child
- treats you like a “person” and not a billing code
These professionals come in the form of doctors, chiropractors, therapists, directors, self-proclaimed experts and positioned experts (meaning they were placed in a position because they look/talk/act good but are fucking clowns and divert all to another person on staff).
Family Members & Autism
My autism journey warning to you is to realize that most family will not understand what autism is. Some will have a preconceived idea, “This girl at my work, her cousins brother has autism and is excellent at math!” The one I hold dear to my heart is that they will compare your child’s autism diagnosis to the character in the movie Rain Man.
Dad, you need to chill. More than likely your parents and siblings, or your wife’s / partner / baby’s momma family will annoy the shit out of you. This will be at first, at times or all the time. It could be you too and you are just not in tune anymore with their individual energy or how you know they’ll approach things. You already know how to deal with “those” family members.
Dad, you need to get your head wrapped around the autism diagnosis first with your immediate family. Then when you are ready, my opinion is for you to have a family gathering. You pick who matters. Get everyone to bring a dish and sit and have a meal together. Tell them you have an announcement that you want to discuss with them.
Make yourself some notes and after dinner tell everyone what’s going on. You’ll likely break down or she will. But you need this too. Tell them what happened, what the diagnosis means and have your child present too. Let them see what Autism is, show examples of the condition. Talk about what you are feeling, what you are up against. Decide if you need to ask for help or tell them you just want them to be “them”. Open the table for your family to ask questions or outline the invitation for them to do when they are ready.
Since there are going to be many opinions come remember that is important for them to know your boundaries. Some people are harmless and think they are helping. You decide if that advice is or not.
Tell your family that this is what is your life now and that there is no “special” way to act. Pity won’t help but understanding will. Ask for help, some favors, money, an ear or space. All are ok.
Friends & Autism
This is a special one for me. Friends. Or maybe they new classification of “acquaintance.” This is special because since Panzon’s autism diagnosis many, many so-called friends moved over to the acquaintance bucket.
In my experience many did not know how or what to do. Some listened, offered verbal support and that was about it. Everyone has their individual lives to deal with and we cannot forget this. But in a time of need sometimes we need some comfort. Sometime we need to realize those that just can’t provide you that as well. You can take the same approach as above mentioned with close friends. So-so friends, well you decide on how and when you want to tell them, or if you even need to.
Another very important factor to remember is how you are. How are you “showing up” for a bro-date or with the group? Are you in the right frame of mind? Are you a basket case, quiet or just not good company? Remember that you contribute to the situation and need to be aware of reactions of your presence.
Some friends will not know what to say or do. Some will ask “What can I do to help” or “Where can I learn more about this?” Like family many will act the same and you can probably peg who the idiots and trouble makers will be for you and your family. Remove them, let them go and do it in a nice way.
Be ready for some separation and some to really step-up. Remember that life is a journey. This is your journey and you chose who to share it with. If they are not contributing to your life moving forward then leave them behind.
Welcome to a new evolution in your life – autism parents. You are going to meet many other autism parents and it’s “interesting” to say the least.
Autism parents are everywhere now and have no particular face. Many autism parents are beaten-down. They are strong- stronger than many you’ll ever meet. They’ve been through a lot more than you and can share experiences, provide recommendations and solace at times. Some autism parents are also needy as fuck. They can cling to you and want to be your role model. Some autism parents will be even more broken and compliant and will suck your energy too.
Every autism parent is a warrior, which you are about to come. Take every step slowly and listen to what they say. Understand the reasons they say it, how they say it. This will help you in your journey making decision as an Autism Dad.
**don’t forget to read my disclaimer and that all opinions here are expressed by me, written in my style with no permission or forgiveness.**