There are times when I have a meltdown in my head. It’s hard to describe the feeling, I kind of internalise the meltdown and run it like a film in my head. Of what I truly need to do – but can’t. A film, running with me screaming my head off, ranting out all the words I want to yell at the situation or person. Imagining it like an alternate universe scenario.
I am having one right now. Wow, how can I type up a blog post and meltdown at the same time, you might wonder. I wish I knew. It’s a horrible feeling. Containing this humungous explosion that really, really needs to come out. I always was the passive autistic sub-type. The internalising type. There is some crap in life however, that makes it so hard to remain passive.
Like when the system is so obstructive, so resistant, so customer unfriendly and unhelpful, that just keeping an autistic child managing, just coping, becomes impossible. There is no autism awareness. There is no putting the wellbeing of special needs children first, no caring that the family are the ones suffering as a result. Never mind supporting autistic parents by simply making reasonable adjustments and doing what they can to help a situation.
Inside my head, I’m crying. I’m raging big-time. There are a fair few ‘F words’ flying. The average special needs parent will feel such frustration on a regular basis of course. Imagine being autistic though and restraining a meltdown in that situation. A meltdown is a loss of control. Imagine masking that. Because you know that if you allow it out, those very professionals who are obstructing and resisting complying with the law; being flexible and actually doing their job properly, would use it against you in a heartbeat. You would be labelled as mentally unstable and aggressive, the consequences of that could of course be huge. As a parent, my own needs and difficulties must be suppressed.
So I fight it. I fight it with everything I have. I try to ride this feeling of compulsion, like someone with Tourettes trying to restrain their tics. Like a mega “premonitory urge” before the tic comes. Imagine sitting on that. I feel like I want to burst. Something’s gotta give of course, so in the end, of course I will just cry. Cry at the injustice of it all. Cry that so-called “professionals” can be so cruel without a second thought. Cry that I’m forced into fighting the system when it’s the last thing I want or need. Cry that as an autistic, I can’t be myself, I have to pretend the whole time. I have to force myself into being a robot for the sake of society and ‘the system’ and what it deems ‘acceptable’. I’m living a lie. But I don’t have a choice.
This mask has become so heavy, it’s almost crushing me.
Planet Autism Blog 
Wow. Totally wow.
I found your blog because I googled EDS and autism to see if maybe there might be a link, and liked your writing so I kept reading and this is absolutely so very dead on. It reminds me of a day when I had to pick my severely ADHD daughter (her older brother is autistic and I’m firmly convinced they’re really just different manifestations of the same damn thing) up from the “alternative” (punitive) school she’d been sent to because of her outrageous behavior in “normal” school. I got stuck in traffic behind someone driving a fancy Volvo SUV with honor student stickers and the adorable stick figure family and I just lost it. I drove down the road screaming and crying and wailing and completely freaking my kid out because…..
…..because that will never be my family and because my family will NEVER look like people expect a family to look because being so very ADHD myself and trying to raise 3/3 special needs kids is not a set up that will ever look “normal”.
I have a rock on my desk painted like a very odd little water bird of indeterminate species who obviously has special needs himself. (You can see it in his eyes.) His name is Dave. When I get past my breaking point at work I imagine that he is stomping his little birdie feet and snappy his little birdie beak in a little birdie tantrum on my behalf and it helps a little.
Thanks so much for your feedback. Sometimes it feels like just talking to the ether when I write blog posts. But I want it to be out there for the very same reason you replied. Because someone else will be experiencing or feeling it too. And if it helps just one person, it’s worth it. I have ADD too and a child with ADHD so I totally get it. ASD and ADHD are inexorably intertwined. Apparently up to 80% of autistics also have ADHD. And you might find this article interesting: https://spectrumnews.org/news/attention-deficit-may-mask-autism-delay-diagnosis/ It’s quite possible your daughter has underlying ASD because (as you may know) it does present a bit differently in females and having ADHD, it could well mask it. She is at higher risk because she has an autistic sibling. They are both neurodevelopmental disorders with genetic links. It could be a case of what came first, the chicken or the egg, as to how two co-morbid conditions affect the presentation of one another and which wins out diagnosis-wise. So it’s completely understandable that you identify with a blog post written by an autistic! And yup, I totally get it when you describe not having a normal family/existence. It’s overwhelming, when the feeling comes, so ignoring it is probably the best way, for me anyway. Love your little birdie fantasy. In my case it’s probably a bigfoot stamping craters into the earth!!
I actually came here after having one of these myself, looking for some more information on the internalized meltdown because I just now discovered the term and how perfectly all of these descriptions fit me. I was diagnosed with ASD at the age of 20, but my mother always knew it was Aspergers specifically and I’m finding all this very helpful, so thank you
You’re very welcome. I didn’t know other people had them. It’s a case of being high-functioning enough to be painfully aware of your own difficulties but also how others will react and how embarrassing it would be after the event, if you let it out. So internalising (which I think autistic females do much more than males) is the only option. At what cost though.
I’m hooked on this fascinating condition and am currently waiting for my 14yr old daughter to be assessed for ASD, hopefully this June (2022).
My daughter, from being roughly 3/4 years old would disappear out of my sight from time to time and I’d have to go in search of her. I’d normally find her hiding behind a door, behind the sofa or in her bed, away from me and anyone else. Sometimes she was upset, other times she’d hide her face away from me with her hands. When I’d question her as to why she was hiding she’d say something like, ‘I hurt myself’ or ‘Sarah in school was really nasty to me’.
Sometimes I’d collect her from primary school and she’d come out visibly upset. When I asked if she was okay she’d always say, ‘I’ll tell you in the car’ or ‘i’ll tell you at home’
I always wondered why she chose to keep it to herself until alone and I now question whether these were silent meltdowns or an internal meltdown. I’d really appreciate any input or thoughts.
Thank you for this informative blog. It’s been an eye opener.
Thanks for reading the blog. It’s hard to say what your daughter was going through in those moments because every autistic is individual. She sounds like she was overwhelmed. Autistics also catastrophise and worry about things neurotypicals don’t. So she may have been perseverating on things that upset her. Shutting herself away is a typical autistic thing to do when overwhelmed, there is a need to escape and shut out the world.