Is it Truly the AUTISTIC Person’s Experience?
My son, Bas, was 2.5 years old when it was first suggested to me that he might be Autistic. This wasn’t an informal or formal diagnosis, but a family member mentioning off-handedly:
“Uhm… Renée? I think he’s Autistic.”
I was surprised by the idea. I mean, he wasn’t talking yet, and I hadn’t the slightest idea why, nor was I worried because I didn’t talk until I was almost 3. However, lack of speech wasn’t the only thing different about Bas, and I realize now what others saw when they looked at my son:
The Red Flags of Autism.
But at the time, his so-called symptoms were just part of Bas. For the hell of it, I ended up doing a cursory search of autism and what the diagnosis encompassed. Those of you who follow my blog know that in-depth research into Autism did not begin for me until Bas was about five, so what I’m sharing with you today happened approximately 2.5 years prior to that.
Now this is NOT a post about diagnosis, so if you were thinking of skipping it and waiting until I posted something more interesting…
We’ll be melting down shortly.
Autism, Its ‘Symptoms’ and Why My Autistic Son Could NOT Possibly be Autistic… Could He?
During my initial research, I accepted little and rejected so much information that much of it remains a blur. However, there was certain information that stuck with me. Meltdown, for instance, was a term I came across a time or two that I found, well… unsettling. The information I found described what could only be called rage-filled tantrums lasting for hours on end. Parents, scared to death, unable to help or control their children’s outbursts. Now, that was more than 8 years ago and I can honestly say I ignored a lot of what I came across and can no longer recall it in much detail. Fear and frustration at all of the negative information I was reading played a huge part in my choosing to forget it as well, but what I do remember is this: What I was reading scared the hell out of me! It didn’t sound anything like my child.
Note: I have to share that none of the information I came across mentioned adults, possibly because the idea of adult Autistics was merely that…
While I am research-driven, the many symptoms of autism: meltdowns, stimming, scripting etc… were not terms I studied in great detail, mainly because the information given initially did not describe my child. I was assured that if Autistic, my child would be unaffectionate, unemotional, unloving, uncaring, untouchable, unreachable. None of which is even remotely true.
Please keep in mind this was before my son (or his sister and I) was formally diagnosed
My son is the most laid back and most affectionate person in my family. He has a great sense of humor, although I’ll admit I haven’t the slightest idea what he’s laughing about half the time, and he’s very reachable if you take the time to learn how to reach him – i.e. pay attention. You see the information I found did not describe anything I’d ever witnessed. I’ll take partial blame, maybe I should have delved more deeply, but what I found was so far off base, at the time I didn’t see a need for the further exploration that would take place a few years later. However it may sound,
I truly was not a parent in denial.
I was a parent discovering information that did not describe her child. Instead I was finding data on subjects in clinical studies that removed their humanity and created statistics. As a Mom I couldn’t relate the information to my living, breathing, beautiful son.
The Meltdown as a Neurotypically (NT) Defined Experience
I would like to offer a reason as to why I was under the impression we had never experienced meltdowns. Interestingly, the material I encountered was not authored by Autistic people. All information I read was from Neurotypical (NT) resources or learned from one or two NT parents of young children. So the description of a meltdown for instance, was not via anyone who had ever actually experienced them, but from people who had observed them. Same for all the other Autistic ‘symptoms’ I had read about.
I’m sure the accounts had some validity, but it didn’t help me understand what a meltdown was. It gave information as to what to look for: warning signs, characteristics, behavior…
But it didn’t tell me what a meltdown FELT like.
When a NT person writes about our experiences, it makes them impersonal. It is not an experience that comes from within. It can’t possibly convey the emotions and feelings that are felt during the meltdown. It can’t share the trigger and why it was felt so powerfully. It can’t explain the anger, frustration and fear because coming from an NT, it is only an…
… and how reliable is that? Unless the Autistic person described the entire experience in detail, in which case the observer still can’t feel what it’s like, then the observation is merely an outsider’s opinion.
At no time in my 42 years, my daughter’s 14 years or my son’s 11 years has any of us experienced an uncontrollable, rage-filled, screaming tantrum that lasted hours on end with no respite. Am I saying that a meltdown can’t be that?
No, I am not.
Meltdowns vary from person to person and each episode can be as unique as the person experiencing it. I have also learned that my meltdowns – yes, I’m finally accepting it – vary from time to time, as do the triggers and the intensity and duration.
So, You Do in Fact Have Meltdowns?
…Absolutely, and so do my kids. Once I joined social media, and met so many amazing Autistic people via Twitter and through other blogs, I learned through their expertise and information sharing that I was having meltdowns, and that I had been having them since I was old enough to remember.
I’ve talked to you before about guilt and masking so you understand that I’ve been in hiding almost my entire life. When I was very young, unless I completely lost it with my older brother, I hid my meltdowns. Why? Because I had no idea what was happening to me and I was scared to death someone would see, think I was unstable and send me away. I can remember sitting in my room as quietly as possible, as young as five years old, rocking, crying non-stop and pulling my hair. I remember biting myself, in places on my body that couldn’t be seen and with enough control to not leave a mark.
As I got older, I remember hitting things: walls, doors, floors, myself. Pacing back and forth, a nervous wreck. The anger had gotten worse by then, and my ability to hide it diminished rapidly. By 12 my Mother decided I had hypoglycemia like my oldest sister, and that was the reason for my outbursts. We couldn’t afford extra doctor’s appointments (and had no insurance), but my Mom had been nursing my sister’s hypoglycemic ‘fits’ for so long, she knew how to handle them. In essence, my Mom was…
Ascribing her NT ideas to explain my Autistic experience.
These episodes continued through high school, and by my freshman year in college, I was a mess. My hypoglycemic ‘fits’ were now accompanied by full blown panic attacks. These new episodes were defined by a medical doctor who, as far as I know, was not Autistic. In addition to both the hypoglycemic and panic attacks, I had insomnia, chronic migraines, and what appeared to be obsessive compulsive disorder (OCD – undiagnosed because we still lacked insurance). My Mom, of course, was the only one who knew because I hid what was going on from everyone else.
Eventually there were extensive evaluations and CT Scans to rule out possible medical causes. Since nothing was found, except low blood sugar (hypoglycemia) in my blood work. The official ruling…
It was all in my head and I needed to calm down.
So, what did I do? Worked even harder to hide everything from everyone and for two very good reasons:
1.) The Doctors must be right (because nothing was found during evaluations)
2.) I was scared to death I was losing touch and might be sent away.
AUTISTICS are the EXPERTS
Let me say that again so it will sink in…
Autistics are the experts.
When I am talking about Autistic life, Autistic people are, hands down, the experts. I understand we have many professionals that are experts in the study of Autism, I know several I respect highly. However, unless they themselves are Autistic, they cannot share our experiences. They cannot tell you, personally, what being Autistic is like because they cannot experience it.
And that’s what I had been missing.
I did not know my kids and I had meltdowns (shutdowns, nonverbal moments, that we were stimming, and scripting…) because, until I began reading Autistic blogs and communicating with other Autistic people, the accounts I had read didn’t fit. They were impersonal descriptions of observed behaviors. They were…
Feelings clinically defined and outlined by non-Autistic people.
Can you imagine if you were having some sort of an emotional breakdown, and instead of finding support of some kind that could address your feelings, your triggers and your personal experience, I brought you a checklist of matching symptoms so I could define your experience for you?
Do I still have them? I do. Not often, but I do have them. Do they feel like they did when I was younger? Rarely. The anxiety and anger have lessened dramatically and I believe it is because I am older and have a better understanding of my personal needs and control over my experiences. Sometimes I cry but mostly I just get angry. As SIB goes, I might dig my nails into my hands hard enough to leave marks, but not break the skin. I’ve noticed now that I’m older the non-verbal moments are my biggest tell. I can’t say a word. On the inside I feel as if I’m going to explode, wrought with anxiety and seething with anger, but on the outside I’m pacing and looking for a quiet place away from people.
I won’t share my daughter’s or son’s meltdowns, which are thankfully few and far between. First, because I didn’t ask them. And second, meltdowns are personal experiences and I’m not comfortable sharing that about them, which is why I didn’t ask in the first place. When they’re older, if they like, I’ll let them share.
For me? Easy.
Leave me alone.
And I mean that as kindly as possible. And it sounds like the last thing a parent might do for a child when they see them in emotional upset, doesn’t it? And maybe it’s not the right thing for everyone, but I have always handled them on my own, even before I knew what they were.
A meltdown for me is extremely emotional, embarrassing and frustrating and not something I want to share with anyone.
My kids handle it the same way. If any of us are feeling a possible meltdown coming on, we just leave. Go to our rooms or somewhere in the house we can be alone. I don’t worry for injury with either child, so leaving them alone is not a safety issue. Being alone allows us an opportunity to calm down and gain a better understanding of what is happening and how we would like to deal with it on our own terms. It gives the feelings of anger, and the anxiety and stress time to dissipate so we can begin self-repair. We are well aware that someone is a shout away if we need them, and there is a security in that, but at the same time we need the control over our personal space so we can make sense of things.
Although people tend to use them frequently, compassion and support are the last things my kids and I are looking for during a meltdown. I talked about what that type of support really feels like here, and it’s not a positive experience. We generally like to be left alone for however long it takes for us to feel in control. Exhaustion tends to set in afterwards and we just want to rest.
The Autistic Experience, AUTISTICALLY Defined
Again, so much of the information available is written by non-Autistic people, and while some of it is very helpful (check my blogroll for some excellent non-Autistic writers) it is still someone sharing experiences about others. And these folks will tell you the exact same thing I’m going to tell you:
If you want to learn about meltdowns or any other Autistic experience, and what your child may be going through…
ASK AUTISTIC PEOPLE
I also have several excellent Autistic writers on my Blogroll that I consider “must reads,” who share their experiences so beautifully it’s as if you’re sitting right there with them. I urge you to read their words and understand the gift they are giving you when they share meltdowns and shutdowns, or what it’s like to be non-speaking, why they stim, their thinking processes and how very differently they experience social interactions and the environment itself.
If you listen to Autistic people, read our work on blogs and in books, through poetry and essays, or perhaps via social media, you will better understand the…