And because it’s me, here are plenty of cute cats to break up the (sadly) quite serious nature of this post.
Advanced news: After composing this, I shall be an utter wreck for a bit, so send the cake and kittens now. And probably some vodka.
Also, necessary disclaimer: Because of the sensitive nature of some of the information here, there are some details I can’t (or won’t) provide. Some things you’ll just have to wonder about.
Okay, 3, 2, 1…here we go.
The week of Thanksgiving, I had to be without my oldest son; he was in the hospital, at the pushing of a social worker who did not understand that he was suffering from an emotional shutdown, and that, as an autistic teenager, this is in fact somewhat normal and does not mean he’s about to go jump off a bridge or throw a bunch of people off a bridge. Neither did she understand that this would pass (most likely within hours), and that he’d find a way to keep going (as he does), and that transferring him to a locked ward in the hospital — a situation that he would then not be allowed to leave, regardless of his or my own wishes — was not the way to handle it.
White Fang is 15, and a couple of traumatic instances have occurred in his young life (no offense, but bugger off, you’re not finding out what), but suffice it to say, it took a toll on his emotional processing recently, and he is rubbish at dealing with it on his own (despite his valiant efforts to do so). So he reached the point a lot of ASD adolescents do — he became despondent, morose, and overall struggling. What’s the best thing for families to do? With ASD teens, maintaining their routine and a secure, familiar environment is PARAMOUNT. Being in a locked hospital unit for 4 days hardly fits this description.
Now, as a parent, I was stuck in between wanting what was best for him, knowing what was best for him wasn’t necessarily what many medical professionals would recommend, and my heart aching for his aching. For the first and second day, he was very cooperative, and did everything that was asked of him, even when it went directly against his sensory input or an introverting need.
And I prayed that this experience would be a positive one, and that he would feel he got some help on the particular tough issues he’s facing. He wasn’t aware when the initial social worker told him that going to the behavioral sciences unit at the hospital would mean becoming nearly a prisoner; he actually agreed to go have an evaluation, hoping that he’d be out of there quite soon with a solid plan for how to proceed and start feeling better.
But by Thanksgiving Eve, he wanted me to get him discharged, as quickly as possible, by whatever means. It was a combination of the environment not being ASD friendly (constant bright lights, not being allowed to go outside, the uncomfortable bed), and having his personal belongings taken away and a number of protocols enacted around him that prevented him from doing such regular things as wearing shoes or asking to use the phone — and NONE of this being explained to him that it would go this way.
Meanwhile, I was at home, not receiving frequent updates on his treatment, his regular activities, what the prognosis was, what tests they were running on him (for example, I knew he’d have a lot of blood drawn, and never did find out all of what they looked for) — just that they’d conducted an initial evaluation with him, and were double checking in with me to see if he had a history of being delusional (lovely to have that trust), and if it was okay if they started him on a medication.
Oh, and all of this was told to me 2nd or even 3rd person via a nurse or some other staff member on the unit. The doctors assigned to White Fang’s case didn’t actually speak to me. Didn’t call. Didn’t ask questions, update me on what they thought, planned treatments, possible outcomes. Didn’t try to meet me when I came for visiting hours. Until one of them was apparently forced to at a family meeting the morning after Thanksgiving Day.
By then, I’d already had some very unpleasant and upset conversations with some quite unhelpful people, and — praise God — some very helpful people at the hospital. And I had my legal rights issues ducks in a row, regardless of the particular safeguards for mental health exceptions — since White Fang had proven he wasn’t a danger to himself or others, and that the unit had never taken the crucial step of establishing that early on in his admission, which meant that they had to discharge him after he and I had asked for it and filled out the correct paperwork.
Long story short: We were successful. The day after Thanksgiving, I took him home with me.
Pause for cheers. And tears.
Side note: The first thing we did was go to Starbucks.
Soon after, I was able to make him an appointment to get started with counseling (though I had to call around, and the first place never did get back to me). We’ve met with his primary doctor (who was, pardon the language, pissed off), and I know we’ll have the GP’s complete support on whatever treatment we want to pursue. There have been other issues as well in the last couple of weeks, such as the medication prescribed didn’t work at all for White Fang, so we’re back to the drawing board on that, and I’m really debating how to handle the first social worker who really read this so wrong and didn’t give White Fang the information he needed so that he wouldn’t suddenly find himself in a bad 1970s movie about behavioral health wards.
Now, before I go any further, I need to say this: As a former psychology major and a previously mandated reporter in daycare, I do understand that when it comes to mental illness, doctors and nurses involved have specific policies and procedures to follow, and sometimes they aren’t pleasant for the patients, and sometimes they are necessary to keep people safe. I’m not saying any of that is evil. It’s a tragic truth of living in a fallen world where some individuals do need to be locked up so they won’t hurt others. Here’s my problem with it: The psych ward is, most of the time, NOT the place for autists who are simply having a meltdown, shutdown, or a series of either.
And here’s my other major problem with it: Too many medical professionals do not realize this. They don’t know enough about autism specifically, or have preconceived notions about ASD. They look at the common symptoms of a meltdown/shutdown (raging anger, intense brief sadness, inability to comprehend others’ perspectives or advice in the heat of the moment, headbanging or some other form of hardcore stimming that may be mistaken for intentional self-harm, rather than a desperate need to blow off steam), and see a crazy person. We’re as sane as a stack of hats; we’re simply experiencing the lowest point of an overstimulation crisis.
On top of the grave misunderstandings still surrounding autism, in this particular, personal instance, the lack of communication I — and White Fang — received from the staff on the unit was disturbing. It made them look like they could’ve cared less about our feelings regarding the treatment — and in the 21st century, in a civilized society, there should be no excuse for that. Indeed, it shouldn’t even happen.
I’ve also met with some of the administration at the hospital, who (thankfully) took my concerns (and complaints — of which there were a lot) seriously, and I was informed that staff involved were spoken to, as the administrators agreed with me that what occurred wasn’t acceptable. They also concurred that my ideas about unit-wide education on how to work effectively with autistic patients were valid and were, in fact, going to happen soon at their facility.
So, that’s the story.
Give me a moment, please.
… … …
So, what can families of autists who may be experiencing depression and anxiety — as a result of something, or just as part of being alive on the spectrum — do to help their loved one? As long as safety isn’t an immediate and true concern (like, if you find them standing on the roof of a 3-level building, do call 911), leave them alone during a meltdown or shutdown. Make sure they’re somewhere secure and familiar, where they’ll calm down more easily and faster. Block out the yelling and screaming and crying and swearing and throwing things. Don’t try to restrain them (unless they’re physically hurting someone else, or about to leap off that roof).
Take them to therapy. A counselor that understands autism — and ACCEPTS it as a condition that simply makes for a somewhat challenging and unique life experience. Go to therapy yourself. Form or join a support group for parents or guardians or caregivers in your situation.
Even if you really don’t want your child taking medication, if it’s prescribed, try it. During certain stages of hormonal surges in our lives — for example, puberty — our already-struggling emotions will feel overwhelmed, and some anti-anxiety or anti-depressant meds could really help.
Don’t punish them for going through this. Let them stim as much as possible. Don’t take away computer time or force them to socialize more, because it won’t get them out of their slump. Soooo many autists’ lives have become SO MUCH BETTER by the invention of social media, because we communicate SO MUCH BETTER in writing and not directly face-to-face. Our support groups are more often than not online, with people in different time zones or even countries.
And if you — God forbid — find yourself in a situation like White Fang and I, don’t take flack from underperforming hospital or facility staff. Go to administrators and Patient Relations departments. (Even on a holiday, you can find someone to help you. I used the hospital’s Facebook page to accomplish my task.)
Don’t be afraid to speak up if you feel you or your loved one received unfair or poor treatment. Hopefully it’s resolved quickly and to your satisfaction; if not, keep finding authorities and people — media, Congress, autism advocate organizations — to talk to.
And NEVER, NEVER, NEVER GIVE UP. You will all get through this. It will get better.
Okay, I can’t anymore. Invisible moth signing off.