Autism Spectrum Disorder. It’s a massive catch basin phrase for a wide variety of disorders that place people on a separate pathway from those who are “neuro-typical” (NT). People are funny. They eventually understand that they enjoy being different than others, but no one wants to be ‘too different. It’s a balancing act that begins once children are exposed to each other the wonderful group setting of Elementary schools and continues for most of their adult lives. Some people never escape from the fear, while others eventually grow up, gain empathy and can accept the vastness of our differences.
When you have a child on the “spectrum” as a mother, you become aware that your child is ‘different’ than others their age, very early on. Even before you can cognitively compare them, there are behaviors which send red flags to your brain, telling you that this baby is not behaving as they ‘should’. They don’t want to be touched or held. Changing clothes creates screaming to the point that you remove a new shirt, looking for pins and needles. There response to things such as schedule changes, foods, light, environment, is either absent or excessive.
This is when emotions escalate between partners because as a mother you ‘know’ something is wrong and your spouse may not be able to see or accept what you are trying to ineffectually explain to them, as you don’t quite understand it yourself. It’s a feeling that is backed by what you consider inappropriate responses from a baby or toddler. You may not even quite understand why you are uncertain, you only know things ‘aren’t right’. You go to the family Doctor and explain what you see and what your concerns are.
Most often than not, the first few times you visit the Doctor with spouse and baby in tow, you are told that your child is too young for a formal diagnosis. You may hear things like: You are a ‘new mom’, your child is ‘normal’ or this is how babies act. At first you may buy it, but then you start to get angry. You resent the fact that you aren’t being listened to. You thought your concerns were serious enough to make a Doctors appointment and now you are being dismissed.
You are the one who knows your child and you KNOW something is wrong. You just don’t have the experience with what ‘it’ is. So you start researching. You start reading. You google toddler behaviour and you start to educate yourself. With relative ease, you match their actions to words from published Doctors and are able to diagnose your child as being on the autism spectrum. The idea you now have a definition for what you are experiencing, scares you.
Part of you feels vindicated because you are validating that something you were intrinsically aware of as a mother, has been proven through your personal research. Then another part of you springs forward with deep seated fear. Fear like you have never known before. A million questions rapid fire through your brain with the topmost being, “Why was your family Doctor so reluctant to diagnose your child, when you could come online and diagnose them, yourself?”
Now that you have the start of an explanation for “why” your child is acting as they do, what do you do now? Most parents make another appointment with the same family Doctor, if for nothing else, to ask for a referral to a Pediatrician if they don’t already have one. The foundation of mistrust is now there between them as a professional and you as a parent. You feel like they lied to you, as they downplayed your concerns and passed them off as irrelevant, as if the fact our observations, coming from our personal inexperience as a parent, were less valuable than their own. You are scared and now angry which is not conductive to any relationship, let alone one where you are looking for answers about the most important and vulnerable person in your life, your child.
When you have a very young child who is acting abnormally compared to their peers and you search for explanations, you have started down the path of diagnosis with a series of Doctors and professionals that will be spread over months and years. Indeed some of these relationships will last the child’s lifetime. You will rule out allergies, sleep disorders, pathogens and other ailments. Your child will be tested and re-tested, poked and prodded. You will wait 6 months for a 15 minute appointment with a specialist to confirm what you have already determined, is not a factor for your child. You play the game of elimination of symptoms until you get a diagnosis of ‘Autism’, which by the time it comes, you are happy to finally have it. Words on paper.
Of course, all this time has meant your child has grown; birthdays have happened, regular milestones met, church attended and school started with expectations of either group activities or solo lessons in sports, music or educational pursuits. What were once issues at home that Mom had identified as problematic have now become glaring concerns now that your child inside the educational system because of the major difference in how your child responds compared to their peers. All of a sudden there is a rush to diagnose and treat a child to enable them to conform in school.
It can be difficult as a parent to not feel resentful when you have been trying for years to get help for your child and now your concerns are finally being addressed simply because a teacher can’t handle your child in their class. Most parents learn to ‘let it go’ because they are finally getting the assistance from professionals that they have sought for years. An Internal Support Team and a School Support team of school led, educated adults are now introduced into your child’s life. Parents, Teachers, Vice Principal, Principal, Special Education Coordinators, Speech and Language pathologists, Occupational Therapists, Social Workers, Psychologists, Guidance Councillors, Social Services all show up to discuss your child and create a plan of action.
You are overwhelmed. Completely. You are also relieved. Inertia is a hard thing for a caring parent to accept as they want to proactively work at resolving issues their child has, as it’s considered their responsibility. Now you have plans in place, courses of actions to take, appointments to keep and a feeling that you are progressing. You arrange for play therapy as well as Doctor Appointments for your child. You arrange for psycho-educational testing and behavioral analysis. You finally have a brief explanation to shoot back to other parents, who give you dirty looks for the way your child may act during a school trip.
“He has autism!” Which translated means,” I am NOT a bad parent. I am not spoiling my kid. No, he is not over tired! I am not a lazy mother! Stop judging me, us, him!” When you have a neuro typical child, you take so many things for granted. Things that you consider ‘normal’ I look at as milestone events. Think about how many Birthday parties your child has attended over the course of their childhood. It’s easy for me to count, as my child went to none. Not one single Birthday invitation.
Nothing is ‘normal”. You live in a constant state of conflict, of fear, of worry. You have to adjust, explain, to parent, to guard, to watch, to never have a single free moment of thought, because if you slip up for the 15 seconds it takes to use the bathroom, it could mean the destruction of a $2000 sofa. Toddler tantrums in an 18 year old are not fun. How can you manage that? Autism and puberty. I seriously don’t know how marriages survive it or how you endure it without drug and/or alcohol addiction.
Living with someone who has Aspergers, with a variety of other issues as well, is like being inside a locked room with a wild Lion. You can never trust it, even if you spend hours, days, weeks or months together. Anything can make them turn to their violent side. There aggressive side. It is exhaustive and brutal for a family to experience. NO ONE can possibly know or understand how hard it is from the outside. Unless you have lived under this stress and experienced the PTSD of the personality type, you can not even remotely know how hard it is to parent through and STILL love the person bringing such toxicity into your life.
Because you do love them. You just struggle with how to like them when they are completely un-likeable. When they are horrible. When they say and do evil things. And yet it’s all explained away with “he has aspergers, he can’t help it.” It means you have to suffer through years of physical and emotional abuse and ‘let it go’ because they can not be taught how to act in every single moment of every single day and in every new situation. Because one little thing can change which then sets them off and everything crashes around your feet like broken shards of glass.
I often thought that life would have been easier with him, if he was just slightly more disabled. Just enough so that others could look at him and know that he was special needs. But not so much that he would not be able to perform the modest amount of guided care he performs. His disability remains hidden until there is contact and communication. Many times it’s exposed when he reacts inappropriately to normal situations.
Most people just think he’s an ignorant asshole. It doesn’t take long for them to disregard and dismiss him. He is never included or sought out. He lives in isolation and it has to impact him. Then again, I may simply be projecting my NT ideas on socialization and emotional responsiveness onto him. The danger is when he is confrontational with people who don’t take kindly to it. He is a perfect target because he doesn’t understand how to read social situations. He doesn’t know he is offending people purposefully. To him, he is simply speaking truth.
We all worry about our kids. For some of us, that worry is actually a deep fear. Fear they can’t make it on their own, fear that you are going to be stuck with looking after them forever. Fear that you will never escape a brutally abusive relationship that can never be structured any differently simply because of the limited abilities of the person involved. It’s not like you can get respite care. It’s not like you can walk away. There are no ‘how to’ books on how to live with and parent an adult child you don’t want placed in ‘the system’ or out on their own to be taken advantage of.
While they are younger, you somehow trick yourself into believing there is an end date in sight. That you simply have to get them through Elementary and High School. THEN WHAT? They will never be a ‘normal teen’ and launch into University or College. Not without the massive issues you always have to deal with. That you’ll always deal with. That you can never escape from. It’s a life sentence you will have forever until somebody dies. If it sounds bleak, it’s not really meant to be.
The reality is life is hard. Finding them something they can do, that they are willing to do, is a massive challenge because it all falls onto the parents. The constant guidance, falls to the parents. Living with an emotionally volatile toddler in an adult body, is not fun. I find it hard to smile or find joy in things when every experience in my entire day revolves around having to ‘deal’ with something. I TRULY live in the moment. Having a rare good moment, may be the only one I get in the entire day.
I am grateful for everything he can do. I keep hoping that he will be productive. I keep pushing him to be as independent as he can be and I deal with the consequences to that choice when he reacts with volatility. I challenge him and exhaust myself on a daily basis. There are times when it seems too much to handle, too much to endure. Yet, that’s not an option. Not when you made the choice to become a parent. It comes with a lifetime contract.