Autism

On the Stairs

By / November 10, 2017

It was six pm and I was standing on the stairs watching my daughter on the floor of the landing while she had a panic attack. Life was too much. She could never do it all. She was failing at everything.

Every time I’m faced with one of these meltdowns, whether it be a panic attack, depressive episode, or OCD freak out, I have to choose. Do I use this moment as a learning opportunity, carefully nudging the person in front of me toward realizations? Most of the time I can so clearly see the choices they made that directly contributed to the meltdown. However, mentioning those choices often leads to lecture mode and the person shutting me out. Do I recognize the actual suffering in front of me and sit down with them in sympathy? This is more comfortable to me than confrontation, and thus I risk setting a pattern of meltdown and rescue. Except we all need rescue sometimes. Do I ignore both the sympathy and education paths to focus on management skills where they learn to set emotion aside and get stuff done anyway? Sometimes a little coaxing gets them moving, and motion makes things better. Other times, my push makes the meltdown worse, harder to pull out of. No choice is obviously right or wrong. The road is never clear.

Mostly as I stood there, leaning on the wall, I thought about how tired I was. How I’d spent several hours of afternoon helping another kid with his home school, and forcing us both to confront the fact that he is, once again, failing some of his in-school classes. That made me tired, discouraged. Because I’d thought things were going well. I’d thought he was stepping up and handling things. But he wasn’t. And we had to negotiate a carrot-and-stick agreement which hopefully will provide him with the necessary motivation to actually do the work and turn it in. I have an ongoing part in the motivational plan, a reoccurring task set, and I have to be willing to actually apply the agreed upon consequences. Even if the result is an unpleasant experience for everyone.

I also thought about how the other son has been in the depths of depression for days, completely unwilling to talk to me about it. He doesn’t want my answers. He rejects my experiences of depression and the tool set that I offer for dealing with it. He is absolutely sure that my answers won’t work for him. It is the same impasse we’ve had to varying degrees for several years now. A change is coming with the new year. It’ll be a big shift. It might finally offer him a way forward. It might be his path to a brighter and happier life. Or it might make everything much harder and darker. We have a long stretch of weeks before I can find out how the change goes. And that makes me tired too. Waiting is exhausting. Particularly when I have to watch him being miserable while I wait.

This all presses on me as I look at my daughter on the floor. The largest thought in my brain is that I really don’t want to help manage yet another emotional tangle. I was weary. In that moment, and many moments like it, I was irritated to have to deal with the excess of emotion. It was late in the day, I wanted to be unwinding and relaxing, not trading work effort for parenting effort. And I felt bad for these selfish thoughts and emotions. Maybe the right answer would have been for me to walk away. To let her figure it out for herself. I considered doing it, but I have to be completely convinced that leaving the person alone is the right course, and even then I’ll spend the time in a state of anxiety, actively preventing myself from going to them and trying to make it better. Walking away is as exhausting as staying.

So I stayed near and made exploratory statements down each possible path to see which one got a positive response. The solution turned out to be a blend: covering her with a weighted blanket and leaving her alone while I sorted a few jumbles of things in her room. Then she centered herself enough to request a reprieve from some home school assignments, which I granted. We made a plan for her to get math help the next day, and she pulled out her psychology homework. She ended up showering and heading to bed rather than completing the work, but she’ll likely be able to do it tomorrow without difficulty. We hope.

After all is sorted and calmed, I sit by myself with my computer. This wasn’t actually all that difficult a day. Not compared to days from the last several years. The ongoing struggles are real, but all of the kids are far better able to articulate what is going on inside their heads. They’re able to discuss problems and solutions with me in ways that they could not before. They’re able to listen when I explain why a situation is frustrating to me, instead of the faintest hint of my frustration turning them into curled up balls of stress panic. I can clearly see how much better off we all are than we were.
I’ll take that.
Tomorrow.
When I’ve had some time to rest.

Notes from a Class on Building Good Digital Habits

By / December 9, 2016 / 1 Comment

The class was billed as being about digital addictions, but it turned out to be far more generally useful and less alarmist than the description made me fear. It was taught by Dr. Ryan Anderson, who wrote a book on the topic Navigating the Cyberscape: Evaluating and Improving our Relationship with Smartphones, Social Media, Video Games, and the Internet. It was the second such class, though I’d missed the first session which delved into the neuroscience of how digital media can create the same biological and neurological responses as chemical addictions. The second session focused on recommendations for what to do about the potential for addiction, or how to manage an addiction which exists. It was a topic that fascinated me, because there are folks in the Tayler household who are a bit too attached to their screens. Yet I approached the class with quite a bit of anxiety, very afraid that the teacher would propose solutions that would require me to upend our family’s coping strategies. That was not what he said.

The first thing the lecturer told us was that video games, social media, television shows, etc are not inherently evil. They have great potential to make our lives better, and probably already have. Second he clarified that while a digital detox can be useful to expose which of the digital media in our lives are problematic, detox isn’t an effective means to break an addiction. The core problem with digital addictions is not the existence of digital things in our lives, but that we’ve allowed our lives to get out of balance so that the digital things take up too much space. The fix is to find ways to balance your life, to make sure that you’re being mindful about the choices you make and intentionally choosing digital things only when they enhance your life instead of from habit or dependence.

One of the things he went over at length was how much time we should be spending on screens for optimal enjoyment. The golden zone appears to be 1-3 recreational hours per day. (Note that time on screens for work or school doesn’t count in those hours. It engages the brain differently.) People in my house routinely spend five hours per day (often more) on screens. But the teacher didn’t recommend the sudden imposition of a time limit, because time limits provoke battles. Instead he gave a long list of things which help us to bring balance into our lives, and to combat the patterns of shallow thinking which are the natural result of prolonged social media and sound bite exposure. I’ll list some of these suggestions below.

I wrote notes throughout the class. I do think that the lecturer had a strong bias to view digital media and games as more dangerous/addictive than they are to most people. This bias is the natural result of the lecturer working with and studying autistic populations who are particularly vulnerable to video game addictions. Yet I saw great value in his list of suggestions. When class was over and I transcribed the notes, I picked two things to apply in my life. This too was part of the class, he warned against attempting a major overhaul of our lives. Pick one or two small changes and let them settle before picking one or two more.

The two changes I decided to start with for myself were implementing a one-screen-at-a-time rule. If I am watching a show, I don’t need to be playing a game on my phone at the same time. If the show isn’t sufficient to hold my interest by itself, then I should do something else. I also want to consciously practice giving my full attention to a single thing rather than partial attention to multiple things. The second change is to spend the hour before bed away from screens. I don’t need to be checking on the status of internet things right before bed. Those things will be there in the morning. Looking at them in the morning is less anxiety inducing because I have the time and energy to take action, whereas at bedtime I just end up stewing on things. Then there is the science which says the light from screens can disrupt sleep patterns. The one caveat I’m allowing for me is if I’m watching a show or movie with someone else on the big family TV. That may happen before bed some days.

Interestingly, though I’m only imposing two rules on myself, I’ve discovered that some of the other suggestions have been implemented as well. Just knowing what they are helps me make more conscious choices in my relationship to technology. I haven’t imposed any rules on the other members of my household, but I’ve talked to them about the lecture and about the shifts I’m making for myself. I’ve already seen some of them begin making more conscious choices as well.

I think I may buy Dr. Anderson’s book and read it in detail. The suggestions I took notes on are covered in there. And I’m certain I missed writing notes on some good suggestions.

List of suggestions for improving life balance:

The so-so solution that someone will actually do is better than the ideal solution that someone won’t try. Take any step that inches you closer to a healthy balanced life. You can take further steps later.

Read a physical book. The tactile experience associated with paper focuses the brain differently. Some of us need to re-train our brains to engage with the slow unfolding of story and language.

Learn to wait without needing a distraction, watch your surroundings and pay attention to your thoughts about them. Learn to sit with boredom and see what thoughts come to you.

Make something with your hands (can be a puzzle or playing with magic sand)

Sketch, paint, or color

Pay attention to others needs and do something to help without being asked

Make a practice of thanking others, either out loud or in writing.

Cook from scratch

Meditate

Make amends

Have tech free time every single day

Only use one screen at a time

Go for a walk, or get outside, or watch a sunset. Do something slow which brings you into contact with outdoors or nature.

Do something to make your living space cleaner

Don’t begin a session of video games or social media until you have a plan for when it will end and what you will do afterward.

Plan a head and do full days with no tech.

Have an hour before bed with no screens

Before you google, think, question, hypothesize, experiment, explore, discuss

Limit tech locations, make sure you have tech free spaces in your life.

Have at least one tech free day per month.

All the things in my head

By / July 18, 2016 / 2 Comments

Colloquially it is called “Getting up on the wrong side of the bed.” The fact that there is a colloquialism about it, shows that the experience of waking up in an unpleasant emotional state is a common and normal experience. Yet it feels to me that there is a fundamental difference between waking up a little grouchy or sad, and waking up feeling as sad as if someone you love just died. It is the difference between tripping because you misjudged the last step and falling into a pit. Yet the wrong side of the bed terminology might serve as a bridge to help those who haven’t had this experience understand those who have.

It wasn’t a pit this morning, but after two nights of insomnia, I woke into a day that just feels a little sad. I looked at my list of things to do and it felt like I’d already failed at most of it, which isn’t a great feeling to have at 8am on a Monday morning. I’m used to feeling a little overwhelmed at the tasks of the week. I’m often afraid that I will fail if I don’t get moving. But this morning I had the sense that I had already failed before I’d even attempted to do anything. Logically I knew it wasn’t true. This week has great potential for success. I just needed to get moving and do the things. Yet pushing against that feeling of failure is like walking in waist deep water with a current trying to send me in a direction I don’t want to go. It is a gentle current, one I can counter, but pushing against it is tiring. Push I did, and by afternoon things felt better.

It is possible that the morning emotion was in part due to thoughts I had yesterday. I was thinking about how I’ve written very little about the kids on my blog lately. This is not because they haven’t provided material, it is just that with teenagers it is more complicated to navigate which parts of the stories are mine to tell. Since January Gleek has become more clearly OCD. I’m not sure if that is because we’re now seeing the behaviors for what they’ve always been, or if the “volume” has been turned up on those behaviors. It is hard for me to judge because it all feels like daily life to me. Yet when I use objective measures, such as participation in girl’s camp, I have to acknowledge something is different. Last year she was able to stay all week. This year she had to come home early because being there was too hard on her and on her leaders. There are specific incidents that both Gleek and I find fascinating (Why does her brain do that?) but writing them up feels vulnerable and my first loyalty must be to my daughter not to any audience.

None of the other mental health issues have vanished either. While Patch hasn’t had a full on panic attack since school started, he hasn’t exactly been going out into the world doing adventurous things. He’s demonstrated some more self awareness than he had before, but he still locks up in a way that is like the panic attacks, but with less adrenaline. Link, Howard, and I are still working to figure out what adulthood will look like for him. Being connected to resources for autistic adults has really helped, but much of what I’m hearing is “give him extra time to develop and room to learn from the mistakes he makes.” Patience is a thing I’m tired of having to carry around all the time. Kiki’s struggles are improved and not mine to tell.

I still wrestle with my own thoughts, wondering if I am culpable in the quantities of mental health issues of my children and deciding, yet again, that genetics have a stronger influence than nurture in this case. (Family history from both sides which include: Autism, anxiety disorders, depression, bi-polar disorder, ADHD, and a host of other things.) I think about work, money, packages, and projects. I look ahead to the advent of school and to Gen Con and to the cruise at the end of September. I plan for these things. My thoughts keep circling over the same ground and it all feels like repeats. I don’t really want to blog repeats. That gets boring for me as much as anyone else. I need to do some things to break me out of my cycle of thoughts. I need to take the kids out of the house and get out myself. There are plans to do that on Wednesday. And GenCon will take me far outside my usual stomping grounds. Hopefully getting outside the box will help me shake loose some new thoughts that are interesting to write.

Incoming Appointments

By / January 26, 2016 / 1 Comment

I should not have taunted the medical appointment spirits. Over night one of my kids spiked a fever, an OCD therapist got back to me which means I’ll soon be adding a weekly appointment to my schedule, and I’m now researching whether occupational therapy is covered by our insurance because that would be helpful for a different kid. Have I mentioned I get tired of appointments? Even when I know they’re important and helpful to my people.

Disorders in Hiding

By / January 26, 2016 / 6 Comments

Sometimes autism doesn’t flap arms or drone on forever on the infinitesimal details of one particular topic. Sometimes Autism can look like a friendly kid who calls his friends over and is the instigator of group play. Autism can be wearing the exact same outfit every single day because your clothes are part of who you are and you don’t feel like yourself in different clothes. Often this means duplicates of clothes. Autism can be standing in a group full of people who are all talking and laughing, wanting to be part of it, but they only talk about things you don’t care about. Autism can be refusing to go into the lunch room because it is too loud and ending up sitting in a hallway off by yourself feeling lonely. Autism can be feeling certain that you made an agreement with another person only to discover that they understood what you said completely differently from how you meant it. Autism can be being unable to do an assignment because you can’t wrap your head around how to begin. Then everyone gets angry with you because it looks simple to them. Autism can look like stubbornness and laziness.

OCD does not always flip light switches, count posts, or line things up in rows. Sometimes OCD is becoming actively uncomfortable and antsy if someone else is sitting in the spot where you expected to sit. This discomfort may cause you to lash out in anger. Then you have to face the consequences of your angry outburst. OCD can be carrying all of your books and school papers in your arms because that is the only way you can constantly be sure you have everything. OCD can be not throwing away any school papers and carrying them all in the ever-growing stack because it would be terrible to not be prepared should the teacher ask students to pull out an old assignment from three months ago. OCD can be wrapping every thought with a cloud of tangential and descriptive information which obscures the thing you want to tell other people. Only you can’t skip any of the information because it is all connected. And if anyone tries to interrupt the thing you’re saying, you get angry, because you weren’t finished, and the thing you were saying is important and must be completed. OCD can be correcting the pronunciations of the people around you because if a word is said wrong, your brain can not let go of that word until it is spoken correctly. One of these things is a quirk. All of these things together is a disorder that affects pretty much every hour of every day and every relationship in your life. OCD can look like disobedient defiance, rudeness, and disrespect.

Anxiety does not always worry about things. Sometimes anxiety is a heart that races and palpitates even though there is nothing going on and the person feels calm. Anxiety can be feeling antsy and agitated, like post-adrenaline shakes, even though nothing happened. Anxiety can be imagining a dozen possible futures and making plans to be prepared for all of them. Anxiety can be hyper-organization that other people praise, and which is actually useful, except that it never allows rest, vacation, or breaks. Preparation that never switches off. Anxiety can be needing to leave an event because there are too many people moving around and talking, making you unable to track everything. And you have to track everything, because if something goes wrong, you must be ready for it. Anxiety can be skipping work opportunities because they require face-to-face interaction. Anxiety can be checking up on other people’s work until they get annoyed with you, but you can’t not check because you have to be prepared if they didn’t do their job. Anxiety can look like a nagging and controlling personality.

ADHD is not always easily distracted. ADHD can be so focused on a project that suddenly you realize that people are standing over you angry because they’ve been trying to get your attention. ADHD can be the sound of pencils scratching on paper overpowering the thoughts in your head. ADHD can be deciding that today you will REALLY pay attention and make sure you get all your assignments, only to realize that you missed hearing an assignment because you were busy planning how not to miss assignments. ADHD is being lost in the thoughts in your head. ADHD can mean always feeling lost or out of step because everyone else knows what is going on, but you haven’t any idea what the instructions were. ADHD can be a jittery leg, all your pencils chewed to bits, and fingers that twist and play with whatever they touch, all without you intending to do any of it. ADHD can be lost items and missed appointments because at the important moment your thoughts were on something else. ADHD can look like chronic disorganization, negligence, and a person who doesn’t care enough to get things done.

Depression does not always stay at home lying in bed feeling in a pit of despair. It is not always dramatic or suicidal. Depression can be doing all the tasks that are required of you, but enjoying none of them. Depression can be feeling like things will never be better than they are now. Depression can be binge watching television shows on Netflix, because then you don’t have to listen to your own thoughts. Depression can be playing endless games of solitaire to fill the spaces between required activities. Depression can be deciding to stay home rather than go out with friends because being social sounds too exhausting. Depression can be having friends drift away because you’re not the person you used to be and you don’t have emotional energy to maintain the friendships. Depression can be crying at seemingly random times over things which wouldn’t normally cause tears, like a happy song playing, or the store being out of the cereal you like. Depression can be a messy house because you only have so much energy to do things and laundry didn’t make the list this week. Depression can be not bothering to brush your hair or change clothes because it is too much work. Depression can look like a person who is standoffish, slovenly, and unfriendly.

So if you have to deal with a person and they are awkward, rude, nagging, standoffish,or negligent, pause a moment before you condemn them. It may be that they do have the character flaw you perceive in them. Or it may be that the person is fighting a daily battle you can’t see, and they need your compassion instead of your anger.

Finding a Dream

By / December 10, 2015 / 1 Comment

He was supposed to be in school, not in the car with me driving for six hours to fetch his sister from college. He had a 3d graphics class we’d put him in because I hoped that it would spark an interest in him. I’ve done that a lot in the past few years, had him try out various classes, throwing spaghetti against the wall to see if an interest would stick. If one stuck, then we could seek out mentors. We could parlay interest into ambition and into an adult career or job. At eighteen, finding something my son wants enough to reach for adulthood was the most important task we could face. More important than graduating with his peers. Either the teacher wasn’t right, or the classroom environment wasn’t right, or it was just the wrong direction. Despite his innate capabilities with the software, my son disliked the class. I’ve learned from experience that we were better off letting it go and trying something else rather than trying to fix it. So when he asked to come with me on the trip, I said yes. I’m very glad that I did. Without the two of us pinned in a car, it might have been months before we had the conversation.

The conversation unfolded as soon as we were in the car. It was like all the things that had been pinging around in his head had finally come together into a cohesive whole. Like many of my conversations with him, it started in the middle and I asked questions to gather the missing pieces until I understood the full concept. This conversational mode is so obviously autistic in nature that I wonder why it took me eighteen years to see it. But then I don’t have the pattern recognition skills that my son has. (Him looking at reflective road markers: “I see the pattern now. The yellow ones mark the places where the emergency vehicles can turn.” This dropped into the middle of our conversation just like I’ve dropped the parenthetical into the middle of my story. I never even noticed that the reflectors had different colors, let alone deduced what they were for. This sort of thing grabs at his attention constantly.) My son laid out the pattern before me: A job he would love to have, the things he needs to make it happen, the goals necessary to get the things he needs. Suddenly, click, it is all there. As soon as he told me, I could see it too. Just like the road reflectors. Now he can move forward. He’s been stopped for more than a year, balking at adulthood until he knew how to proceed.

I’m not allowed to say yet what the plan is. It feels too important and fragile to him for it to be public knowledge. I can say that I think it is a good plan and he has a real shot at making it work. I will not be giving him the things he needs for it. I will be giving him encouragement and showing him how to acquire the skills to get the tools to get the things. Triumphs can’t be gifts and I really want him to experience a triumph that is truly his own.

It is possible that the will to move forward won’t stick. It is possible that he’ll give up. But even having this dream at all will help him across some of the road bumps that he wasn’t willing to tackle. For now, I’ll take the hope.

Special Needs Scavenger Hunt

By / November 18, 2015 / 2 Comments

I’ve spent the last eighteen years participating in an educational scavenger hunt and I’ve only just now recognized that was what I was dealing with. By age three it was obvious that Link was a special needs kid. It was also obvious that he was friendly, happy, loving, and smart. With the first diagnosis of language delay, I began seeking for things that would help him. I made up games, bought games, and worked with Link regularly. All along the way we had teachers, psychologists, and administrators who were very helpful to us. They gave me pieces I needed and helped us find our way forward. Yet we still spent a lot of time stumbling around because for all the help we did get, there was other help that we didn’t get because we didn’t know the right keywords to unlock those options.

A year ago depression loomed large in Link. He was desperately lonely and overwhelmed with trying to manage a full load at public high school. It seemed like we were constantly readjusting his schedule, dropping classes, switching to different ones. We were trying to find a balance, a way that he could do homework before he left the school grounds so that home time could be free of school stress. When I finally was able to identify depression as the problem, I called for a meeting with his school counsellor. It was like the word “depression” was a key that opened up a cupboard in her brain. “We could put him in home health.” She said. Then she described to me a mode of schooling which was something I’d been trying to describe for at least two years. It wasn’t that she didn’t want to help me before, but until I said “depression” she didn’t make the connection I needed.

I know a lot of parents shy away from seeking diagnosis for their special needs kids. I’ve done it myself. There are so many fears attached to diagnosis and the worry that the child will be labelled or pigeonholed. That has not been my experience. Instead I’ve found that a diagnosis is a passcode that opens up options. It is a lever which pries open pathways. I thought that because everyone was so willing to help, that I was getting all the help I needed. But that became less and less true the further along we got in Link’s education. At the high school level, staff is compartmentalized and specialized. There are lots of options, but it falls to the parents to seek out the options and ask for them. Parents have to be advocates. This requires lots of work, and it is exhausting.

I really recognized the scavenger hunt when Link was diagnosed as having autism one week before his eighteenth birthday. The diagnosing doctor handed me a folder with the phone number of a parent advocate and information sheets on three different transitional programs which might help Link. At that moment I thought how naming depression had led me to scheduling an appointment with a psychiatrist. The psychiatrist had given me information about autism advocacy groups and had suggested that getting a definitive diagnosis regarding autism was probably worth the time and expense. He also referred me to NAMI, who runs education and support for mental illness. I went to a support group for the families of those with mental health issues and they suggested that I sign Link up for Voc Rehab and the WIA youth program. So we did that. Multiple places encouraged me to finally plunk down money with a diagnostician and say “Is he autistic? I’ve seen autistic things since he was little, but I’ve also seen distinctly non-autistic things. I’m tired of not being sure.” The answer was that yes, he definitely is, and the diagnostician was frustrated that it hadn’t been identified when Link had been in kindergarten.

This is how it goes. One piece of information leads to another. There is no central source that knows all the options. Or if there is, I somehow always manage to arrive there last instead of first. By the time I was in touch with the parent advocate, I’d already heard of all the options she mentioned. We’ve still got more hunting to do. At this moment we’re waiting on funding from Voc Rehab. I’m waiting for a call back from the school district about their transitional program. I’m also waiting for a call from an adult educational specialist who can explain the GED process to us, because maybe that is the way to go. We’ve accepted the fact that Link will not be graduating with his class, even though his school counsellor would really like for that to happen. Sorting it all is a huge burden in time and emotional energy. It always has been. I constantly feel like I could be doing more and simultaneously I worry that I’m over helping.

Last night I went to a Relief Society dinner. This is the women’s organization of my church. I spent quite a lot of time visiting with a woman in my neighborhood who also has an autistic son. We’ve known each other for years, but me speaking about Link’s recent diagnosis opened up a huge well of shared experiences that we spent an hour talking through. She listened to me and was frustrated on my behalf that I spent so long without access to autism-specific resources that would have made the journey easier. As part of the decorations for the dinner there were anonymous notes on the wall where people wrote about the kind things that others have done for them. One of the notes said that I’d pushed to get her daughter into early intervention. I feel like I should know who wrote that, but I don’t. It could have been one of a hundred different conversations that I’ve had with people about special needs resources.

Last week I got a message on facebook from a friend who had read my post on Finding the Right Therapist. She asked me questions about therapy and children. I gave her what answers I had, but mostly those answers were in the form of additional questions she should ask and some direction for whom she should be asking. Thus I become a stopping point on someone else’s scavenger hunt to figure out how to help a child who is struggling.

I must admit that I spent some time this morning looking back at my past struggle and grieving that no one thought to give me answers that would have helped. I went ahead and let myself feel that grief. I know that I don’t want to spend a lot of time and emotional energy looking back with regret, but I have to feel it before it can pass and I am able move on from it. Moving forward is what is necessary because the scavenger hunt continues. I suspect it will always continue for Link in one way or another as he tries to navigate a neurotypical world while being who he is. Though hopefully we can reach a point where the hunt is not a major feature of daily life, and the hunt is primarily Link’s quest, not mine. He needs to be empowered to find his own solutions.

Some days I can believe that we’ll reach an independent adulthood for him. Other days I can’t. This too is part of the hunt. I’m not just seeking resources, help, and answers. I’m seeking emotional balance, peace, acceptance, and maybe even joy. This year is better than last year. We’ll continue onward to see what comes next.

New Diagnosis: Autism

By / September 17, 2015 / 6 Comments

Last week I mentioned that I got a new diagnosis for one of my kids. Link has autism. Link accepted this information with very little emotional reaction. Which is how he often reacts to new information. Then days or months later he’ll come and ask questions about the thing I’ve told him. So far he hasn’t bothered to ask me anything, which could mean he’s fine with it, or could mean the thoughts are still percolating. I’ve spent the last week or more sorting out my tangle of emotions about this. It is strange to suddenly discover, after eighteen years, that I am the parent of an autistic child.

Things I am feeling:

Guilt: This kid has had full behavioral psych profiles four different times in his life. At each one there were indicators for autism, but the professionals and I said “I don’t think it is.” We said that because when he’s relaxed and happy he’s able to meet eyes and empathize with others. He also doesn’t have some of the stereotypical behaviors like stimming or echolalia. The guilt is because I was satisfied with “we don’t think so” and never requested the extra step to check.

Peace: Because I know that at every single stage of Link’s life I have done everything in my power to help him. I made the best decisions I could based on the information I had at the time. I’ve worked hard for this kid and he has worked hard too. It is possible that an earlier diagnosis would have opened doors and treatment options for him. It is also possible that he is more advanced and socialized now because he was not shunted off into an autism educational track. There is no way for me to know and woulda coulda shoulda is not a useful game to play.

Hopeful: Because this diagnosis opens up access to some transitional programs that are designed to help people with Link’s particular set of challenges. We have a clearer path into independent adulthood than we did a month ago.

Worried: Because I don’t know how the autism label will affect Link’s self conception and I don’t know how the world will perceive and treat him because of it. So far the signs are hopeful. When I told Link he’s high functioning and that autism has a huge range of expression, it seemed to shift his self view. Suddenly instead of being at the low/disabled end of one spectrum, he’s at the high/most-capable end of a different one. I’ve seen the same out in the world. When I tried to describe his challenges before, I had to use a lot of words and often wasn’t able to convey what he needed. But the world is familiar with autism. When I say “he’s autistic” people nod and know how to adjust for him. And they say “He does really well. I can’t even tell.” So maybe my worries are unfounded, but they linger in my head and will for a while.

Tired: Because all the thinking and emotions are exhausting. Also we still have a long road ahead of us to help Link get to an independent adulthood.

Awkward: There is this huge community of autism parents out there and suddenly I have the diagnosis that says I belong. Except I don’t believe that my experience with Link is comparable to the experience of a parent whose child is profoundly autistic and who has had to bend their entire lives around autism management. As with any community there are social rules, controversies, and hot buttons. I don’t know them and so I don’t know if I want to dive in and participate. I don’t need another community. Or maybe I do. Maybe I need friends and guides who have been down the path that I need to walk with Link.

Awkward: (with a side order of embarrassed) My life is full of people who have known Link his whole life. Each time I encounter one I have to decide whether or not to say “Oh by the way, Link is autistic.” I have to decide if saying it is relevant to the person and relationship. I have to evaluate which people will feel hurt/upset if they are not told. I have to consider if having the label will change their interactions with Link in good ways or in unfortunate ways. If I do say something, I then have to watch them react and have emotions about the information. There is also an element of embarrassment here. “Hi my son is autistic, but I’m so clueless I didn’t figure it out until he was eighteen years old.”

Sad: The sadness is not new nor really altered by the diagnosis. It is the same sadness I sometimes feel for my other kids too. I’m sad that things which come easily to other kids are so difficult for mine.

Regret: I do wish we’d had this diagnosis at least a year or two earlier. High school has been really rough on us and we would have approached it differently. The last year has been a crash course in standard educational modes not working and learning to adjust.

Enlightened: When viewed through a lens of “this is autism” many of Link’s quirks begin to make sense. He does not think in words, so when he speaks to us, he is translating. He reports that when he does have thoughts in words it is only because he pictures someone in his head saying the thoughts to him. The fact that he has a specific set of “going out in public” clothes in very bright colors, this is his visual name, a visual signature. There are other things too. I can see why the autism diagnosis is correct.

Quiet: For the past year or more I had this clock ticking in my head, telling me that time was running out. I could see that eighteenth birthday coming. I knew the rules changed afterward. Maybe it was passing that birthday and discovering things on the other side not so different. Maybe it was recognizing that he doesn’t need to graduate from high school on the same schedule as everyone else. Maybe it was Link passing his Eagle Scout board of review. Or maybe it was the new diagnosis. The clock stopped ticking in my head. I’m no longer afraid that I’m running out of time.

So far I’m the one with the most emotions about this. Howard and the other kids found it hopeful/interesting and proceeded with their regular things. I had more sorting to do. Probably because I’m in the middle of an emotional sorting process anyway. Now we see what comes next. I’m hoping for a stable period where we all quietly grow.