High Functioning Autism Spectrum Disorder

Transitions: April 2021 NaPoWriMo, Day three

I love you, in a sweet, soft, sigh
From the mouth that once
Pierced my heart
With painful words of hate

Embraced in arms
Firm with soothing assurance
Used to pound fists
Of punishment on my back

Eyes warm with love
Their gaze brightly meeting mine
Used to glare in anger
Over nothing I understood

Soft lips kiss my cheek
In tender sentiment
Had cursed me
In angst and turmoil

Intelligence and curiosity
Shine in the beauty of
My neurodivergent
Tweenager


You may have thought this was describing the cycles of an abusive relationship, at first.

You’re not wrong. But, there’s a lot more to it than that.

In this case, the “abuser” was my child. My brilliant, creative, and inquisitive child, who happens to have an autistic brain.

There was a time before the identification of the autism, when I was struggling so hard, as a mom…mostly due to my mental health and relationship problems with her father.

I have attachment disorder due to the emotional neglect I experienced from infancy onward. Nursing her until she weaned herself was one of the most challenging choices I ever made. Especially since her “period of PURPLE crying” lasted the first five months of her life. She was essentially inconsolable. I was the only one who could hold or soothe her, even a little bit…much to her father’s angst and anger.

Then, one day I was no longer the preferred parent.

The first time she called me a bitch she was two.

Fast forward to her fifth birthday when all hell broke loose between her sister and father. That event was this camel’s straw and I left, taking her with me three days later.

For the past seven years we have been in almost constant conflict. Yelling, name calling, hitting, kicking, scratching, and biting. multiple meltdowns a day. There were days I hated being her parent.

Anger, frustration, guilt, and helplessness were my constant states of mind. My spirit felt defeated.

Then pandemic. I got my first real job in nearly 8 years. Then distance learning. I changed my shift to weekend grayards so I could support her school. Going back to middle school was something you couldn’t have paid me to do. Thanks to COVID-19 I did it for free.

Then Winter Break…two weeks of not having to login. I stopped fighting her. It was destroying us.

I decided that waiting for f2f school to start again was the thing to do. We aren’t the only family or special needs family not being able to make it work.

We started having conversations…mostly about her art and online activities with her preferred programs. We also discussed as many aspects of LGBTQ+ gender identities and sexual orientations as I am familiar with and researched others. Overall, things starting getting better with us. She’s much less combative and exponentially more affectionate, both verbally and physically.

“Mommy, I think quarantine has been good for us.”

Special Needs

Ableism is discrimination and social prejudice against people with disabilities or who are perceived to have disabilities. Ableism characterizes persons as defined by their disabilities and as inferior to the non-disabled. ~ Wikipedia

I made the mistake of reading comments on an Instagram post in favor of Alexandria Ocasio-Cortez. They were mostly positive. But, there was one naysayer who stood out for his initial lack of vitriol. He was just mildly snarky. But, it was like he had committed some heinous sin, instead of posting a disagreement rooted in ignorance.

He was immediately under attack. Mostly the responses remained as snarky comebacks. However, one of them made me cringe.

It sounds like your boss is good at hiring people with special needs.

I couldn’t scroll past without addressing it.

Back in the day, the insult used was, “retard,” frequently accompanied by a physically mocking action. Much like 45’s mocking actions regarding a reporter who experiences a physical disability.

Another one is, “riding the short bus.”

However you frame it, it’s showing a prejudice toward people with disabilities, especially intellectual ones.

How about how mental health challenges are referred to?

What are you, crazy?

Man, that was INSANE!

She’s so bipolar.

That one’s not right in the head.

Or the fact that so many movies and TV shows portray mental health patients as dangerous killers and all the shootings being reported as someone with mental illness, before an evaluation can be done?

The stigma and prejudices against people with physical, developmental, and mental disabilities is real and insidious. Just as we need to recognize, call out, and address racism, in all its forms, sexism, genderism, and sizism, we need to call out ableism.

It isn’t about political correctness, it’s about human rights.

For more on my perspective on ableism, go here.

Midnight musings of a bipolar mind

I sit here, tonight, exhausted and grieving the fact that what I thought was helping to alleviate the persistent depression, is, in fact, helping…just not the way I thought. It has triggered a mini-hypomanic phase. So, instead of the constant, slow, and steady oppression of “mid-level” depression, I’m now experiencing a continual hypomanic cycle, scaled down and dialed back to a flowing stream instead of a flooding river.

I’m exhausted…and not just from the lack of sleep and disrupted sleep, which may or may not be related to the new, supplemental, medication. My little girl has been going through a rough time lately, which is exacerbated and amplified by her high functioning, autistic brain. Quite frankly, I’m living with a verbally and physically abusive eight year old child. A couple of days ago she told me she wished I was dead. Screaming, I mean the “Is it live or is it Memorex?” kind of piercing scream,

is almost a daily thing. Hitting and kicking are among her repertoire of behaviors when expected to transition from a desired activity into an undesired one: Bed to getting ready for school, playing to taking a shower, being home to leaving to go to the store. You get the idea.

Now, I have to go through the search and hiring process of obtaining the services of another Personal Support Worker for her, primarily because her abusive and erratic behaviors burn people out. Probably because I have yet to figure out how to hire someone mentally and emotionally equipped to do the job who has actually been educated and trained to work with children on the autism spectrum. It’s difficult to find someone with that level of education and experience, much less someone who is willing to work for less than $15/hr, 71 hr/mo, for me, and still have to look for additional work, while trying to accommodate the schedule we need the most.

My heart is breaking at losing the current person who’s been working with us. It’s a selfish thing and probably illuminates just how much work I still need to do on boundary setting and codependency. They listen to me. They want to support me as the underlying value of being her PSW. Since they are the only person of any intelligence and emotional stability I deal with on a continual basis during the week, who isn’t a professional service provider of some kind or part of a structured group gathering in a faith community, I’ve become a bit too dependent. Meaning, I could very well be nearing the stage of emotional vampirism.

The night we informed my daughter of this pending change, she was rudely ecstatic. It hurts me to see how hurtful she is to others. That hurts more than the things she says and does to me. I shared my bewilderment and concern about how vitriolic her words and attitudes are. I expressed my overwhelm and sense that I’m not doing enough. Between the depression, bipolar, ptsd, hypothyroidism, diabetes, and fibromyalgia, some days, many days, the only reason I get out of bed is the fact I have to get her up, ready, and off to school. I can only see what I’m not doing and getting done.

They told me how they had agonized over this decision for a couple of weeks, even to the point that it had been the primary topic in their meetings with their support person. They told me that the one thing that gives them hope in this situation and for my daughter’s future is seeing how hard I work for her benefit.

The women I met with yesterday, her DDS (Developmental Disabilities Services) Service Coordinator and her state provided ABA Consultant (ABA is a form of behavior therapy for those on the autism spectrum), also expressed how hard they see me working. Again, all I can see are the things I haven’t gotten done, either due to overwhelm, fear, or forgetfulness.

I even went so far as to let her Service Coordinator know that I’m fully aware of her Mandatory Reporter status and that I will never let that knowledge prevent me from being honest, for two reasons:
1. If I feel it’s reportable, I’ll share it because I KNOW I need additional support.
2. If I don’t know it’s reportable, then it’s EVIDENCE that I need additional support.

The reality is that I ALWAYS need additional support. Especially with this whole bipolar/ptsd thing happening in my brain.

This past weekend I learned that there are two different kinds of bipolar mania: euphoric and dysphoric. I learned about the dysphoric during a breakout session at this past weekend’s 3rd Annual Regional Shattering Stigma with Stories: Shameless day conference. In the same breakout session I learned that the supplemental medication I was recently prescribed to address the persistent depression is one of the many that can trigger mania in the bipolar brain. I should have known something was up, when I started feeling “up” almost as soon as I started taking the med. But, it felt so good to actually feel good after over four months of unrelenting depression.

The question is do I keep on this medication regimen for a while to see if it’s at a managable level that I can use constructively or do I assume that it’s all bad, no matter the degree, and go off the med, back into depression? I don’t think it really is a choice. I have cognizance and awareness, based on the information about what this version of mania looks like and how it was triggered. As long as I’m honest with my therapist and my prescriber, as well as myself, I think it’s doable.

Of course that could be the mania talking.

It’s a terrible thing to not be able to trust your brain.