Bare Necessities

Today marks the day the 4th anniversary of when I ‘came out of the box’ – the day on which I began to have a drastic shift in emotional awareness, clarity, and a lasting change in my affect. I could not have identified that the box was there beforehand, but even relative strangers to me at that time had recognized that something big had shifted in me, and I was no longer as ‘cold’ & ‘aloof’. As time has unfolded since, I have gained perspective about the box, what it was & why it got there.

 

For no reason in particular a song from my childhood popped into my head recently. It was a triplet from the Bare Necessities in the animated version of The Jungle Book.

Look for the bare necessities
The simple bare necessities
Forget about your worries and your strife

The song essentially is Baloo’s way of guiding Mowgli toward accepting poor circumstances and to be more open about going with the flow. It is a familiar sort of notion to me, one that I had undoubtedly carried a long time.

This notion – of passive acceptance of shitty situations – is a significant part of the coping mechanisms that created the box.

I had ‘accepted’ my mother’s dying and death in real time, at the expense of really dealing with anything for years. But no bereavement counseling was provided anyway, and I continued on from that experience in an environment where addressing the way I felt would have led to nothing. Denial and revisionism kept the truth at bay, though the closest it probably had come was when one brother had remarked that “She was a very complex person” in response to my sister’s feelings.

In the face of the immediate, physical bigger struggles – food insecurity, late rent, utilities being shut off – there wasn’t a space for dealing with death. Moving houses. New school. So on. Suppressing those other feelings, and entering a sort of emotional maroonment, was how the box manifested. To cope with deficiency in my daily life, I might convince myself that I needed less. My box filtered out all but the bare necessities, and sometimes even more.

But today is the anniversary of when I shed the box. That day when, having become vested in a new, nurturing & secure home environment, and faced with a challenging situation that called on me to be emotionally supportive in a way I had not ever been called to, the box lifted. The compacted layers of suppressed feelings slowly came loose over the last few years, but within the first couple days at least I had felt really happy. I was connected and in touch, and people in the house thought maybe something was wrong with me. I hadn’t gotten out of the box on my own, but precisely because my best friend needed me.

These days I am a lot more interested in bear necessities. And sloths 🙂

Bare Necessities

Social Insecurity

I am writing this to express to something that I learned during 2016, which is demonstrative of the failures in oversight that were part of my childhood, and how a few simple actions might have made a significant impact on a lot of people if they had been carried out in 2008 instead. While there are many open questions about what happened in the past, I am not looking for, nor open to, answers to those questions. Writing this has been beneficial to me, and I hope that it may further benefit others in the autism-supportive community that I have gained in the last few years.

 

In June of 2016, I enacted the series of steps needed to meet with the local Social Security Administration office about the survivor benefits I might have been eligible for at the time of my mother Andrea’s death. Amber and Ben had occasionally asked me since I was 17 about whether my biological siblings and I had received survivor benefits. I knew nothing at all about survivor benefits and had initially been resistant to pressing further into it.

On the one hand, I did not have a clear understanding of what the benefits were and what the requirements for my mother would have been to receive them. I also had a fear about what it would mean if these benefits had been received, but without my knowledge.

I became open to exploring this issue during 2016. I had already had to work with my school’s financial aid office so that I no longer would be dependent on my father’s tax returns, which had been repeatedly difficult to acquire, and to file my FAFSA early in January. That January I was finally freed from the mounting anxiety and disappointment around my father’s abilities, and with clarity and an honest appraisal of things I felt more prepared to handle what might be an uncomfortable truth about the Social Security benefits.

 

The first time Amber and I went into the SSA office, we learned that “no one had ever applied for benefits on [my mother’s] record”. There was a small sense of relief knowing that the survivor benefits had not been received and spent without my knowledge or input. However, I was also told that “there are no retroactive survivor benefits”, though I could apply for disability benefits on account of being autistic.

This response – that “no one has ever applied for benefits on this account” — seemed to indicate that there must be something that had been available, even if it was no longer available. Following her death, Andrea’s husband had written that an SSA agent had told my mother (later learned to have taken place by phone) that she hadn’t worked enough in the years prior to her illness for us to receive survivor benefits; he made sure to indicate how friends could make up for this “big part of [his] childcare fund” by donating money or time.

We now knew that the statement that “she didn’t work enough in her lifetime to have the government do anything for the kids” was discordant with the facts we were given by the SSA directly – that no one had ever applied for benefits on the account at all. We decided to press further on, returning with legal counsel.

We scheduled an appointment for an ‘application interview’ at which I went through the steps of applying for benefits through my mother’s account, as might have been done at the time of her death when I was fourteen, and four of my five siblings were still minors eligible for benefits. Near the end of the interview, I asked the Social Security agent if she could specifically tell me the amount that we would have qualified for had the benefits been applied for in 2008 when Andrea died. Where I had pictured the low number being on the order of $25 – $75 per month, I was not prepared to hear the actual amount: $450.00 per month, across all eligible children. At $90 support/child per month, this would have amounted to more than $30,000.00 in benefit before the last of us became an adult.

We spent years before her death with limited resources and on food stamps, and living in abject poverty after. I got clothing for school initially as a form of charity, but when I gained weight I had to buy clothes from the thrift store; I still didn’t have enough and spent a lot of time wishing no one would notice when I wore the same things over. I walked in shoes until the tread was gone and holes were letting rocks and water in, so that I wouldn’t have to burden my father with the charge of paying for replacement shoes. I was completely reliant on the generosity of others for things like textbooks, where the costs at times were easily $400. I was poor, and felt it. And every relationship I had in those years was colored by the fact that I was known to have little.

And while $450 per month of support wouldn’t have changed everything, it would have changed a lot. It would have kept the water or electric from being turned off. Or kept our internet on at times we had a lot of schoolwork to do. It would have meant that I had the security of asking to replace shoes, even if infrequently. It would have meant that I at least had something.

We were led to believe that we were eligible for nothing, and it was left at that. Did anyone question this? Did anyone suggest trying to fight the SSA over such a decision? It would seem not; that is, not until Amber, Ben and I sought answers. It is not unlike how my mother handled me being autistic – Andrea had told me she thought I had Asperger’s syndrome, and it was presented as “being socially awkward” and “having above average intelligence”. I received no formal diagnosis, no clinical intervention, and no further information. It was not until I was diagnosed at 19 that I had the opportunity to experience life with an actual autistic identity. Amber and Ben saw the same things everyone else had seen for years, and chose instead to follow-up, to ask questions, to pursue it like it mattered – exactly what Andrea and everyone else hadn’t with autism or the survivor benefits.

 

It is hard to picture my mother finding out that she had been denied a significant amount of money meant to cover the raising of her children after her death, and never mention it. She was loud & combative, and would over-zealously “defend” her children’s rights to a fault. I cannot wrap my head around why this sleight would have gone unmentioned until after her death. It is out of character for her to not have not made a big deal out of this, or to at least have found someone else to do so if she was too sick to make a fuss on her own.

Another relative confirmed that my mother claimed to have been told by the SSA that she was ineligible, in a phone call. She was sick, and even making phone calls was becoming increasingly more difficult to do alone. Calling the SSA takes over an hour on a good day to get to the point where you can ask an SSA employee a question. So I can only assume that someone helped her contact the SSA, maybe she even “pulled her cancer card” (this is how I heard her refer to taking advantage of being sick) in order to be provided more information than they typically would over the phone. My own success in 2 hours on the phone with the SSA was limited entirely to learning the procedure by which I could begin a conversation with an SSA agent in person and what documentation would be necessary, while no consideration was given to eligibility until I had an onsite appointment.

Throughout my mother’s whole illness, the house almost always was filled with friends, family, and occasionally professionals. Between that, and my mother’s propensity for confrontation, I do not understand why she would have accepted that we were being denied death benefits owed to us. Given that the Social Security Administration reported the fact that we would have been eligible at that time to receive a total of $450 per month, how was any of this misconstrued into a denial of death benefits in the first place, and why would she have not gotten any opinions from anyone else about it.

Regardless, no one did take another step until we went in 2016. And if anyone had taken those 90 minutes to do so in 2008, we would have been ensured the death benefits owed to us – to myself and ALL of my siblings.

 

I know that people’s lives go on after someone dies, but this, in the end, required very little work to find out, except a lot of emotional work personally to get there, and it would have had a significant financial impact if the time had been taken to do this 8 year ago instead.

 

We were poor before she died. And even with $450 per month we still would have been poor. It would have meant that groceries stayed in the fridge a little longer, and detergent in the laundry room. Maybe health insurance could be an option, a physical or a dental appointment – I had none for years.

The financial state of my upbringing tested every aspect of our basic needs – food, water, shelter, clothing, and security – and having that benefit from Social Security could not have fixed all of the problems. What it could have done though is allowed the 15 year old me to have a little less shame about what we had, and what we lacked, and to have a little more self-respect. This to me, is why it is worse to have found out we were eligible for $450 per month, rather than $25 or $50. As numerous as the helping hands for my mother were, this thing still managed to slip through so many people’s fingers, and what might have cost some time, I paid in dignity instead.

Social Insecurity

When 53 is the average age of mortality for autistics, that makes all of the mid-20s burnouts and meltdowns mid-life crises.

When I turned nineteen, I was weeks into my second term in college, and, as in the first term, was back to working in the library until the sun came up multiple times a week. My workload was unmanageable, and trying to keep up was affecting my health. I felt more and more like my effort was in vain, and that my life direction was misguided.

To top it off, I was now half the age my mother was when she died, and I was the same age as she was when she conceived my oldest biological sibling. At my very age she was embarking on the confusing, messy business of parenthood, unaware that her life was half over.

I knew this though – that her life had been half over – and it highlighted how little I knew of the future, and the unsustainability of the present. It was a mid-life crisis, and I had recognized it as such, there in the library as the morning neared. I decided to drop the advanced elective that had held me to the fire for weeks. It did lighten the work load, but it didn’t save me much sleep in the long run.

Since then, I have changed homes, schools, lost 70 pounds even. And I also now know that I’m on the autism spectrum. Where I had understood Asperger’s Syndrome to mean being “socially awkward and intelligent”, I now understand that the sensory processing challenges, executive functioning deficits, and mind-blindness that have affected me all fall within the autism heading as well, and being aware of these as problems has allowed me to work with tools to address them, much to my own sense of well-being. My ability to kick over my head, limber stretching, and the excessive degree to which I lean on my surroundings for support I now know to be a result of ‘low tone’, a common trait in autism. Neuroscience research in autism mouse models have further connected impaired motor coordination to an altered synaptic baseline of activation, making it initially more challenging to encode new motor programs in the cerebellum; while I had not heard of low tone yet when I read this research article, I was able to think of the results with respect to my own experiences.

It has now been year since I became publicly open about being on the autism spectrum, and in this past year autism research has uncovered more and more about the long-term outcome for the lives of autistics, from co-morbid health conditions to the job and housing crisis developing for my own age cohort – the autistics diagnosed and given support as children, who are now aging out of those support programs as adults. And in this same year, autistics have been harassed in schools, abused or murdered by parents, and others killed by police during high-stress induced meltdowns. I have meltdowns, and it is scary to think of the danger that armed officers might be to me, lacking training to recognize and act in this context. I have an app now in case I find myself unable to speak in an emergency situation, given the willingness of the other person.

Knowing I am autistic does not protect me from these realities, but I would rather know that I am autistic, and be aware of these things, and try my best to do a little good for someone else that felt like an outsider growing up, impassioned yet disconnected. As I read about the experiences shared by other autistics online, in journals, books and more, about various stages of growth, coping with stress, and burning out, and much else, I am able to feel a sense of camaraderie with total strangers who bear more in common with me than blood relatives or anyone I ever was in class with.

In a world where the pressures of performing, interacting, and doing ‘normal’ things drive some to the absolute edge, it is unsurprising that other autistics are experiencing this by the early 20s, whether on their own for the first time, trying to find work and maintain employment, to feed themselves, or while dealing with significant sensory challenges and executive function impairments.

While it may have been absurd to be experiencing what felt like a mid-life crisis at 19 because of the age at which my mother died, the life expectancy of autistics has recently been found to be 54 years old, compared to the US average of 78.7. I guess that makes the burnout of autistics in their 20s a lot more like mid-life crises.

When 53 is the average age of mortality for autistics, that makes all of the mid-20s burnouts and meltdowns mid-life crises.