The Essence of Autism

I was in an autism discussion group and we were talking about how anxiety can play a big part of being autistic. I mentioned that if I could do away with the anxiety part and keep the autistic part, I think that would be ok. Someone else said that anxiety was autism and it can't be separated. I'm going to have to disagree.

I get that we get anxiety for a lot of different reasons, many of them being sensory issues, some of them being social issues, and others from childhood trauma or C-PTSD. But you can have anxiety without autism, just as you can have sensory processing disorder without autism. Anxiety isn't part of the diagnostic criteria for autism, nor do I think it should be.

What I do think is that we can have it better. We can have and deserve a better quality of life. We don't have to just throw up our arms and say, "well, I'm Autistic and anxious and there's nothing I can do!" Nor do we need to hold the belief that if we manage to control or get rid of the anxiety issues, that we'll somehow lose our autistic identity. 

I really believe the essence of autism is in our brain structure - the connections it has created that are different from neurotypicals. It's deep in our chemistry and make up. It's not something that can be fundamentally changed or taken away. But I do believe there is hope and possibility to alleviate some of the most trying symptoms, like the incapacitating anxiety, and the sensory discomforts.

It's true, as adults, we can often change our immediate surroundings to suit us. We make cozy homes for ourselves, when we can. But we still have to go out in the world, which is by and large not suited for many of us. I think we have been and can continue to make changes in the outside world as well, but I also see a need for us to be able to just be more comfortable in our own bodies. That might be medication. That might mean therapy, but whatever it is, I think we should be confident that we do not have to hold on dearly to the symptoms that are holding us back in order to preserve our autistic identity.

I write this as I'm coming out of a shutdown/burnout. What I wouldn't do to be able to remain functional. I have a family, a job - I can't afford to shutdown, but it happens and I don't blame my autism. I don't think I win any autism brownie points for having them. I think I could be just as authentically autistic without them. Just because I hate my anxiety, it doesn't mean I hate myself or autism. For me, my identity isn't so tied up in that part.

What do you think? What is the essence of autism?

Driving While Autistic

There are a lot of Autistic people who can't or don't drive. Then there are people like me, who just love it. For me, driving represents absolute freedom. Often when I'm driving all by myself, I think about the scene in Rain Man where he keeps repeating, "I'm an excellent driver."

I enjoy the sensation of speed when I'm in control of it. So while I don't like most rides or roller coasters, I am happy to drive myself. I also sometimes get car sick as a passenger, but not as a driver, so I much prefer driving myself. 

I practised a lot before getting my license and I really think my attitude and motivation had a lot to do with it. I convinced myself I was capable and I really wanted that sense of freedom. I firmly believe each autistic knows themselves and their limits, and if they feel like they can do it, they should give it a try (barring other possible health issues like epilepsy that could make it dangerous).

I also think driving actually benefits me in a few interesting ways:

I suffer from meralgia paresthetica in my left leg. I recently started driving a manual transmission car, so this is my clutch leg. One of the ways to prevent meralgia pain is to change positions or move frequently, so driving and using the clutch actually helps prevent my pain. 

Driving, especially a manual car, keeps me focused and in the present moment. I have much less anxiety because my brain is kept busy with what I am doing. Driving is a great way for me to clear my head and relax. 

I know my limits and stick within them. I think since many of us can be very rigid or rule-based, I would guess that those of us who do drive are very cautious drivers who stick to the rules. 

I don't want Autistic people to rule themselves out right off the bat, and certainly not after trying just a few times. Everything takes practise, so if it's really something you want to do, you should see it as a long term exercise that will get better with time and practise. 

The Mama's Mom

TRIGGER WARNING: Parental abuse

I alluded to issues with my mother in my annual year in review post, but I didn't take time to write about it for a few reasons. 1) I'm so over it, and 2) I actually took off to San Francisco on a mini-solo-vacation, so I just didn't have time to spare over such stupidities.

Now I guess I'm ready and willing, and I think it might actually help to share, so here goes.

My mother has admitted to not having a maternal side (which always makes me wonder why she had children) and spent most of my childhood being manipulative and calling me, "stupid" or "idiot" (those were her favorites) at least daily. Essentially, I could do absolutely nothing right. I dreaded her coming home from work, where she would go through the house and find everything wrong with it. If the windows were open, ("who's the idiot who opened the windows?") she would close them. The next day, in an effort to please her, I would close the windows, only to have her come home and yell about them being closed and then open them. I walked on eggshells constantly. (Which is what led to my anxiety, hypervigilance and later PTSD diagnosis, which stayed with me even after moving out.)

To be fair, my father was abusive in his own way, but not quite as bad. I also think there's something that hurts even deeper when it's your mother who is abusive. I ran to my dad for comfort and understanding. Now that he is dead, I do not feel I have a loving parent I can go to for comfort and love, which made the death of my father that much worse.

All this to say, I was scared when my son was born that my mother would continue to heap her shit upon my child and I was deadset on making sure that did not happen. I was powerless as a child to escape, but as an adult, I have the freedom to avoid the toxicity and also keep my own child away from harm. I originally did not want my mother to have a relationship with my son at all, but my sister convinced me otherwise. She believed it should be their relationship to nurture and that my son would resent me if I did not allow him to have a relationship with his grandmother.

So I kept an eye on things and to my surprise, my mom was mostly good. Not great, but not horrible and certainly not abusive. But slowly, little old habits of hers started to show themselves. However, she never SAID anything abusive, so I let her babysit him and he seemed to like her.

Until Christmas dinner.

The Little Man was already stressed to be at her place. We sat at the table, which is very stressful for him, but I did it to make her happy. Looking back, I should not have tried to make her happy, since that always fails anyway. I should have prioritized making my son happy. I take ownership of that mistake and I will not make it again.

Anyhow, to make a long story short, he was not coping well with the stress and she decided the best thing to do to make him comply was to start shaming and insulting him. (Because that's a great parenting technique, right?) In which case, I shut that down.
You know, I don't always stand up for myself, but I will sure as hell stand up for my son.

So we left and my mom cried and got upset and I actually didn't feel bad. I didn't really feel anything. It felt like the same old record started playing again and I'm so tired of hearing the same old song.
And I could easily predict what would happen next. She would contact me and say, "I love you" because that's what she always did. She would yell at me and call me names and then about 30 minutes later, come and tell me she loved me. Always. Like clockwork.
No apologies.

Guess what? A few days later I received the "I love you" via text and an offer to talk. I did not respond. There is nothing to talk about. Unless she wants to apologize (and even then) there is nothing to say. Nothing will change until hell freezes over.

And so I have not spoken to her. We have emailed over trivial things since then, but I have nothing to say. And the Little Man does not want to see her. If and when he does, we will deal with an arrangement then, but she will not be able to be with him unsupervised. She lost that privilege.

As for the Little Man, I came home from that dinner and did damage control the best I could. I sat him down and I apologized to him for arguing in front of him. I told him none of it was his fault and it had nothing to do with him. I told him he is perfect and loved and wonderful just the way he is. That's the best I could do and I don't want to have to do it ever again.

How To Prevent Meltdowns

I started out wanting to describe the experience and then realized it's probably best to know how to prevent meltdowns in the first place because they are really horrible. If you think it's horrible as an observer, I can tell you it's 100% worse as an experiencer (I know I totally just made up a word).

A lot of a meltdown is a loss of control of the situation. Autistic people give many signs BEFORE we get anywhere near meltdown stage, but they are often ignored. Children are more powerless and not so good at communicating their needs, so they have them more often. Pushing/forcing/encouraging your Autistic child to do things they are not ready to do can lead to a whole lot of anxiety and eventually a meltdown. I really want parents to try and understand even when they think they are not pushing too much, a lot of the time they are. I know parents don't mean to, because it seems normal and easy for you and all the other kids you know, but it's not the same with an Autistic kid. When I think back to my childhood, it was an overwhelming mess of anxiety. What makes anxiety different from other issues is that it requires an extra set of skills to overcome it, and kids usually don't have those skills.

When an Autistic child seems to be resistant to do something, like take a walk around the block holding your hand for example, it is not because they hate you, are in their own world, don't enjoy walking or just want to be difficult. They are resistant because they don't know how they will feel outside in the big unknown. They don't know what they will encounter and have to process once out there. They don't know exactly when you will return. They don't know if the toys they have happily organized in a row sorted by color, to give their lives a sense of control and orderliness, will be in the same spots they left them in when they get back. They don't know if they will have their senses overloaded. They don't know if they will be expected to speak to people and say, "hello" or that the correct words will come out at the appropriate time. They don't know if their legs will be tired. They remember that time they fell on the sidewalk and fear it will happen again. They remember being scared by the sound of a fire engine rushing by and are scared that may happen again. They remember the time you took them for ice cream and they got a stomach ache after, and they're scared that will happen again. They fear you won't take them for ice cream. All of that. In the flash of the 30 seconds it took for you to say, "let's go for a walk!" - that went through their mind. I can almost guarantee it.

Not all Autistic kids are that high anxiety, but a lot of us are (or were). I was and it only gets worse the more you try to force us otherwise and ignore the state of anxiety we are in. What happens to high anxiety children? They grow up into high anxiety adults who don't have much respect for parents who disregarded their feelings when most vulnerable.

So the parent or friend or whatever other person has to work on helping the Autistic through the not knowing part. This takes patience, sensitivity and creativity.

I use speech and my presence to calm my child. That's just how I am best able to work with him. Even when he doesn't respond to me with speech, I keep talking. You can use pictures or social stories or whatever way you think works. Do not stop trying to communicate with your child even if they do not respond in the way you expect or are comfortable with. Even if they don't look at you or even appear to hear you, they are, trust me.

So going back to the walk example, I'm going to say it's a leisurely walk with no particular aim other than some fresh air. If you are heading somewhere in a rush, you should prepare with more warnings preparation than this.

Let's say both mom and dad want to take a relaxing walk around the block. You can go to your child and say, "mom and dad would both like to take a walk. We would both like you to come. We want to all go out as a family. We will just walk around the block once and come back. We want you to hold our hands and stay on the sidewalk. You can leave your toys exactly where they are right now and they will be there when we get back. If you need to pee, you should do it now. We will go in 5 minutes. You will need to wear shoes (or a sweater, hat etc). When we get back it will be time for snack/lunch/bath."

Now I don't mean just ramble all that stuff off without taking a breath, but that's the sort of detail we want to know. If yours is the type to ask questions, then answer those questions, patiently, without rolling your eyes and sighing like a teenager because you've answered those questions 200 times before. We need those questions answered each and every time. We need you to be the adult and patiently do that for us until we are able to do it for ourselves. We are relying on you to calm our fears because the world is too much for us to take by ourselves. If you can kiss a boo-boo when we fall, you can answer those questions for us. Autistic kids are doing the equivalent of running into your arms every day, numerous times a day, looking for your love and support. Don't let us down because it presents itself as a series of questions or stims.

A child who cannot ask questions is still asking those questions in their head and needing answers, so answer the questions before trying to go out. I've done this sort of stuff with my kid since he was a baby. If he started crying in the car, I knew I had to start calming him by answering some questions. You can do this with any kid, Autistic or not, and I guarantee your day will go a whole lot more smoothly. I taught daycare workers to do the same thing and it worked for them.

Yes, I am seriously proposing you tell your 3 year old where, when and how you are going and when you are coming back. It's not spoiling them, it's giving them information. You are still the boss, don't worry about that, you will always be. You are still the parent. That won't change. But you are changing the relationship you can have with a child who happens to worry a lot more than others. There may still be protests, but over time it will get easier - especially if you don't change the plan and you continue to respect the high need for reassurance. If they can trust you to give them correct and up to date information, as well as protect them, they will be better able to trust others and themselves when they are older.

You might want to read What Does A Meltdown or Shutdown Feel Like?

What Does A Meltdown or Shutdown Feel Like?

Meltdowns are not fun for anyone, so while it's great to get an idea for what it feels like from the inside, it's best if we can prevent them completely. You may also like to read, How To Prevent A Meltdown.

A meltdown, to me, is an incredibly complex experience that I am going to do my best to break down and describe. The following is what a meltdown feels like for me. There are other accounts (and here's another example). It's not like there's a right way to have one! So if you're looking to understand the phenomenon, you should try to find more first-hand accounts.

Meltdowns happened to me mostly in my teens and early 20s. I would say by 25, I stopped. That's not to say it won't ever happen again, but I hope not. By then, I presume I'd gone through enough therapy and maturing that I have better awareness and control over what is happening to me. As I've gotten older, I have gotten better at not getting myself to that state (or just protecting myself and getting myself out of situations to prevent things from escalating). That's a really important point.

Children do not usually have the power to escape from situations that are triggering, so as a parent, you have to facilitate that for them.

What happens to me now periodically are shutdowns, which are just as frustrating, but quieter and can even go unnoticed to the untrained eye. I still have the occasional passionate outburst, and I can cover that briefly also. My outbursts are mostly harmless and I don't put it in the same category.

Both meltdowns and shutdowns leave me feeling drained and like utter crap. There's really no sugar coating it.

Meltdowns are scary because to get to that point, I have totally lost control. The ones I remember most were caused when people other than my parents were dismissive of me. I learned to tolerate the abuse of my parents, probably just to be able to survive, but I could not tolerate it from anyone else. In my case, when others did it, it really was abusive. I would say, "no, stop that" repeatedly and they didn't listen. They were purposely poking at an open wound. That caused me to totally lose it. These were the only times in my life where I lashed out physically. When it happened, I literally saw red. I cannot see. All I can see is red light and nothing else. It's as if blood has dripped into my eyes and is blinding me. When people say they were so angry, they blacked out and did not even know what they were doing, I think that is what I experienced. Once I raised a chair at my teacher to throw it at him. I was so angry, I could not see. The only thing I remember was the voice of my best friend yelling, almost screaming, "KELLY! KELLY!" until I snapped out of it.

I actually have no regret for scaring that teacher and for whatever reason, I never got in trouble for it. Maybe because it was so out of character for me, who was normally very quiet and on the Honor Roll. Meltdowns are shocking to the person experiencing them because there is really nothing you can do about it. It's out of character and I was capable of hurting people I did not necessarily want to. It can be over as quickly as it started, which makes it strange for on-lookers also. Afterwards, I am left feeling like I've run a marathon - heart beating in my ears, drained, feeling sick and confused.

This looks a bit like a meltdown to me. From http://josiemaysoptionsblog.blogspot.ca/2012/12/antony-gormley.html
Check out this artist's other works. They are very good. 

Shutdowns, on the other hand, are not as outwardly expressive for me. They rarely involve anyone else. In fact, I usually retreat until it's over. A shutdown occurs after a long period of stress. For example, in the months following the death of my father. It's a cumulative thing that I call, "running out of cope." It starts like a panic attack and spirals into the absolute worst anxiety attack you can ever imagine. When it hits me, I actually don't even know what I'm feeling. I often feel like I should cry to let it out, but I can't. I want to scream, but I can't. I feel trapped inside my skin and get anxious, dizzy and nauseous. Sometimes I shake/shiver uncontrollably. Sometimes I gag and retch, but I don't usually actually vomit. Other times I have cried uncontrollably, but that's not as common. What I usually do now is take a Dramamine and an Ativan and just go to bed. Sometimes I will play a repetitive mindless game like Bejeweled Blitz to take my mind off of my thoughts. It is worse for me if I try to pretend it's not happening or to talk to anyone. I have tried going out for fresh air and walk and that doesn't help either. Right now the only solution I have is to drug myself and sleep it off. I usually wake up the next morning feeling totally drained and empty.

It should be noted that I only seem to fall apart like this when I know it's safe to fall apart. In other words, when I am sure my husband is able to care for the Little Man. I feel like my subconscious is saying, "ok, you've held it together long enough, now it's ok to let it out!"

Obviously, daily stress management is an important part of keeping these shut downs at bay, but the amount of cope I have at any given time is variable due to well, just life. This is why I put a lot of work into taking care of myself. It is essential I get enough sleep and eat well. It's even more important during times of high stress. This is difficult because when I'm stressed, I don't usually want to sleep or eat. It's tough because it's not about being on a fad diet or frou-frou lifestyle choice. I will simply not be able to be a functional member of my family or society if I don't take care of myself every day. I can't take a day off from self-care without paying for it later in some way.
(Not a complaint, just making people aware of being non-judgmental when you see someone avoiding a certain food or activity. It's not always for the reasons you think.)

If you have any questions about my experience, please feel free to ask. I am an open book. No matter which one it is, both feel really bad to the person going through it and if there's anything you can do to help them not happen, that's greatly appreciated.

Change and Fears

I have been writing tons about myself and not much about the Little Man. The fact is, things have been great. He adjusted to school life very quickly and has friends there. The big issue is our home life has recently been turned upside down. We didn't get tons of warning from the contractor when they were ready to start our home renos. We moved out to a hotel for one week, then found a small apartment near our house to let for the rest of the month. That's a lot of change for anyone!

In addition to that, I just survived a major layoff and restructuring at work. It's been a stressful couple of weeks for all of us. 

To top it off, the Little Man got a nasty virus and has been suffering for the last week. It's been really tough, but we're still hanging in there. I let Hubby deal with the house and contractors, while I try to deal with the Little Man, for the most part. This is where the fears come out.

He was anxious one morning, so I sat with him while he sat on the potty and just waiting. Suddenly his eyes welled up with tears and he said, "you're not going to be my mommy forever."

Oh my goodness, I was floored. Where did this come from? Then he said, "we're never going back to the house...".
Ah, all these changes! He thought he would lose us, as well as the house.

I reassured him, "I will always be your mama forever, no matter how old you get. And you will always be my baby forever, no matter how big you get. And I promise, we will go back to house."

The fearful connections children make in their heads are so deep. I don't know that I could have anticipated that or better prepared him. We probably should have worked up to telling him we would be living away from the house a short time before. I mean, we mentioned it, but we never specifically explained all that would happen. 

I know for next time, but then again, I hope we don't have to go through so much upheaval in so little time ever again. I could never have predicted this much change coming all at once. We can only do our best under the circumstances. 

#WondrousWednesdays - Varied Interests and Autism

If you look at my cv, I have a strange mix of work and volunteer experience. It shows I've jumped around jobs a bit. It shows I've been both an employee and an entrepreneur (at the same time right now also). It shows I speak languages that aren't particularly useful to be fluent in in North America. I've travelled to 14 countries. I'm into yoga, science, teaching, helping professions - but I've also worked at UPS, danced ballet and played guitar...and drums. It's a completely random mish-mash of weirdness. 

It makes me look scattered. It makes me look like I can't focus or don't know what I want to do with myself. That's what people see when they look at my cv. That's the negativity I've internalized. 

But no more.

I've met many others like me. (Read Full Spectrum Mama's bio, for example) Our varied interests show we've tried many things. It's testament to our spirit of adventure. We have open minds. We are not scared to try, experience and maybe even fail - we don't have to be amazing at everything we do, but we've tried it to see if we like it. 

We dream big and follow them. We research and learn and embrace. We live full lives. I'm sure I've done more things before 25 than most people accomplish by 50. I'm not saying this to brag, I'm just saying this may be a product of my brain and how I think. I've been unemployed and underemployed, but overall, I seek situations out where I can follow my desires, however strange they seem.

It's an interesting dichotomy: I live with anxiety but lack fear to live life to its fullest.

#WondrousWednesdays - Tips

I didn't have anyone to interview this week, so I'm posting interesting posts, tips or articles I've found helpful over the week and could be useful for others.

Adult SPD and ADHD issues

3 Causes of Anxiety and What To Do About Them

How To Teach A Child To Tie Shoes In 5 Minutes

The Floating Bed - I want one! Birthday present?

Tips For Living With A Toddler

#WondrousWednesdays - Two Left Feet Momma

This week's interview is with Two Left Feet Momma! She is my sister-in-law, so she's talking about my niece. It's interesting how these sorts of things seem to run in families. I have never met my niece, since they live at the other end of the country, but I hope to one day and I'm sure the Little Man would have a lot of fun with his cousins.

***

We live in Langley, BC, Canada. Daughter is 5 years old, diagnosed with Sensory Processing Disorder and Anxiety (suspected high functioning Autism). I work full time as an Environmental Health Officer, currently on a Leave of Absence to support my daughter during her transition to school (kindergarten!). 
What is your biggest challenge with your family member’s disability? 

Being in a group setting is difficult, she becomes easily overwhelmed by sensory and social stimulation. Trying to make and keep friends as well as navigate the social complexities is challenging for my daughter. 
What is the greatest gift from your family member’s disability? 

Amazing memory! She can remember movies word for word as well as events in detail from years ago, and she is only 5. She is also becoming a pretty good little artist.
What’s one thing you want people to know about her disability that many don’t seem to understand? 

That it's not behavioural, she isn't "acting out." A firm discipline will not "fix" her. She is unique and requires a unique way of parenting. 
What has been the best part of maintaining a blog?

To me it's my safe place to talk. Where nobody is judging me about my family, my parenting, my decisions.
What is a typical day like in your life? 

Routine! We do similar things in a similar order. It keeps the chaos down
What’s your favorite pastime?

Drawing or hiking 

What’s your favorite food/drink? 

Greek food and wine
Anything else you’d like to share - a tip, words of wisdom, a recipe, a poem? 

Try and live life for today, try not to dwell on what might be tomorrow.