Saturday, September 3, 2016

The Quiet Autism

My eldest, DJ, is a special kind of kid. He was officially diagnosed with Aspergers when he was 7, but I've known he was on the spectrum since he was a baby. It's amazing to me how many people still doubt him, me, the diagnosis, etc. He's 15 years old now. He just got a new service dog yesterday. While discussing the dog with a friend of mine. She asked me, 'well he did ok before he ever had a dog, right?' You see we had a service dog for a little over a year. In that time Daniel was helped tremendously. His dog died in a tragic accident several weeks ago. Even though we are trying to move homes, I'm separated from my husband, our car is on the fritz....even though, I gave getting a replacement service dog priority. I've been asked why a lot lately, which confused me at first. Then I tried to think about my understanding of my son vs the worlds understanding of him. He's the quiet, non-demonstrative Aspie. So, he's often left out - not 'normal' but not 'special enough' either. People thing of those with special needs as those who absolutely can not do something - can not walk, can. Of hear, cannot talk, etc. But my quirky son who 'looks' normal and can even seem 'normal' falls through a lot of cracks.

My son has Always internalized. He wouldn't have massive melt-downs to express he was overwhelmed. He would Shut Down, what I affectionately refer to as Statue. Literally, he would shut down - unable to move or speak. This is especially true when he was being scolded by my ex. For some reason DJ never knew if my ex was mad or just asking him to do something, so he would freeze up. This always escalated the situation as my ex would believe he was being ignored. Shut-downs are one of the ways an Aspie/Autistic person deals with anxiety or over stimulation. As another way of handling anxiety, DJ would often purge - not sticking his fingers down his throat, but when he was overwhelmed or anxious it was Always expressed as nausea- his lips will turn white. He will run to the bathroom and vomit. Often he felt much relief by purging. By age 4, my son would be starting the day by purging at least 3-4 times a week. He would wake up extra early, purge and not even tell me until lunch time. If he became stressed he would excuse himself and purge again. He stopped purging entirely when we had a service dog. He purged twice during the 3 weeks before we got a new one.

Aside from purging. Dj also suffered from Trichotillomania basically he would rip out handfuls of hair. It sounds a bit like separating Velcro. Riiip. We kept his hair long because he doesn't like air touching his neck, but it also helped to hide the large bald spots. This form of self-harm scared me more than the purging. I worried daily that it would evolve into cutting. For a child that, to this day, cries when his hair is brushed because it "hurts" the feel of ripping hair was a relief. So was digging his fingernails or teeth into his arms or legs.

None of these things were apparent to outsiders. Heck even my ex-husband doubted the diagnosis at times, just because he didn't experience these things day in and day out. 

What types of signs/symptoms would people see from DJ? Often it was more like regression. His voice would raise higher and higher into a whining screeching if he was getting stressed. If he was continually losing a game, for instance, he would either whine or express frustration vocally. Or he might give up and storm away. We had an exchange student from Spain one summer, it was a disaster as he tended to make fun of DJ when he would exhibit these behaviors. 

But those were the only obvious behaviors, and they closely resemble a spoiled brat that just wants to be the best at everything. I get it. While I totally understand that some might think we are babying DJ, rather than disciplining him, they don't reciprocate the understanding that they are glimpsing a very tiny segment of his life. I've even had a few people say, "now a-days they will label everything as a disorder, in my day it was called being a brat." What's amazing to me is they are usually the first to recognize that DJ is excessively kind, loves working with young children, never lies, etc. not bratty behaviors. 

It took me years and intuition to build the trust relationship DJ has with me. I don't get frustrated or ask him questions he can't answer (are you ok? How do you feel? Etc). I try to find techniques for DJ to be self-sufficient - when he was at his self-harm worst, I got him slap bracelets. It helped a bit. So did aromatherapy when he was overwhelmed. I learned to read between the lines - I'm usually the first person aware that he is heading into a shut down. I give him headphones so he can listen to music almost non-stop. This cuts out a lot of outside stimulation. 

DJ's service dog was a Grounding service dog. This means she helped him remain calm. She acted as a physical barrier between him and the world around him, she helps him focus outside himself during a shut down. She never judged him or made him feel less for things out of his control. And she gave him the ownership of his condition. He felt like he could manage his anxiety/sensory overload without having to have me there to do it for him. 

So, yes, I completely understand where you are coming from. I know it's annoying that DJ always has his music on when you are trying to talk to him, I know it's annoying he doesn't hold a 'normal conversation' with you. I know it's annoying that he won't play games with you just for fun. I know it's annoying that he gets to constantly hold a cute puppy and doesn't seem to want to share her. ("It's not like the service dog helps him do physical things." I've heard before.)

But, guess what. It's annoying to us to hear you say he doesn't really need a service dog. Or he shouldn't get a new service dog until he's "dealt with the grief associated with losing the last" (even though he is INCAPABLE of processing grief). It's annoying to have you get angry when he shuts down as if it's some judgement of you rather than his anxiety saying 'break time.' It's annoying that we are treated as if we are hangers on in the autism community because my son isn't different enough, doesn't use enough services, have an IEP, etc. I'm sure  having a child who is demonstrative can be overwhelming and scary. Having one who completely internalizes is terrifying - I have no idea what he is feeling and the lead-up behaviors can be easily missed. He, even at 15, is completely unable to vocalize what he is feeling aside from 'good' or 'not good'. 

So the next time you are talking to a mom and she says her child has been struggling with this or that. Remember you are not getting the whole picture. While you can say what works for your family, it most likely will be less than useless to whomever you are advising. Just be there for the parent, comisserate that every child has their strengths and challenges. Don't try to 'fix' things, just listen!!

1 comment:

  1. Thank you!! I have a 15 year old daughter that is on the spectrum, she has melt downs at times and I get comments of, if I would just punish her she would stop... or the comments of, "what can she do??"... meaning what is she good at, cause don't you know all autistic kids have something they excel at... well, up to now, there hasn't been something my daughter has excelled at... however, she is one of the most loving children when she is around younger kids.... people stereo type autistic kids to the few you see on TV, never really understanding the daily struggles, the highs and lows.... good luck in all you are going through!!!