For mental illness and the Autism spectrum, the middle is the worst place to be

*Because I am female, and for the sake of brevity, I am going to focus mainly on the experience of being female and mentally ill and on the Autism spectrum.

Some people believe that if you are mentally ill and Autistic that you can’t function at all. I imagine there are those that still envision the mentally ill as drooling vegetables in government institutions, or what is deemed the criminally insane, locked in padded cells in straight jackets screaming at all hours, or the lady in rags standing talking to herself on a street corner. When it comes to Autist/Aspie individuals like myself, many envision us as completely socially inept, and/or geniuses like the main character on the show The Good Doctor. We either live in a group home or a mansion. Yes, there are these individuals, but they are the most visible.

Like most things in life, mental illness and Autism fall on a spectrum. The opposite of the aforementioned I feel are the next most visible- they are the ones who have “recovered”- or are highly, highly functional Autists/Aspies. They are the those that at one point were severely ill but are now able to manage their symptoms with or without medication and therapy. They can hold down jobs, have mortgages, maintain  relationships, and lead what is considered a normal, stable life. Successful even. Yet some of us, like myself, fall somewhere in between. This in between place, the middle, is a very difficult, confusing, frustrating, and detrimental place to be. We are the ones who are the least visible, the least talked about, and the most forgotten. We are the ones falling between the cracks, because the cracks are in the middle.

There is perhaps some type of work we are able to do, periods of time where we are stable, meds that might work halfway decently. But we aren’t “all the way there”. This is especially true for those of us on the Autism spectrum who are labeled “high functioning”. I’m going to go out on a limb and say that it may almost be easier to be just mentally ill, because while your moods might be unstable, you may hear voices and your illness may even wreak havoc on occasion, there are meds out there specifically for you. There is no such thing for those of us on the Autism spectrum.

For a while I considered myself on the high, “high” functioning end of the spectrum. I was even told that I had “a mild case of Asperger’s” by the woman who diagnosed me, which is basically like saying I have mild, mild, Autism. But the more I examine my past and the inner-workings of myself, the more I realize that I fall somewhere in the middle. The reason I say this is because I spent years and years doing what is known as “masking” behavior, which is particular to females on the spectrum. (A run down of what masking is: masking is basically covering up your Autist/Aspie traits and mimicking other people’s behavior to give the impression that you are normal). Given that I was a performer, I was even more adept at masking. This is one of the big reasons why I think I am seen as higher functioning than I am, and by some as not being on the spectrum at all. I have also never maintained full-time employment, have had trouble with housing, money and relationships, and all in all, being a functioning adult in society.

Autist/Aspie women are more likely than Aspie men to fall between the cracks specifically because of masking and because we are known to be more socially adept (I’m not sure which comes first or if the two are separate really, its kind of like the chicken and the egg argument). Our symptoms aren’t usually obvious enough for us to get early interventions in our toddler or childhood years. This masking behavior in turn leads to a whole host of problems, including identity crises and personality disorders. It is estimated that the majority of people with Borderline Personality disorder are female, and I have read that there are more mental disorders where this is true as well. And given that Autism/Asperger’s is likely to be comorbid with mental disorders, and women in general are seen as weaker and more emotional, we have it extra hard I feel.

Many of us Autist/Aspie females will just be called weird, odd, eccentric, etc. I have been called weird my whole life, and I never knew why until I was diagnosed.  There is always the possibility that one can just be weird without having a mental illness, Autism/Asperger’s, but many times people label us as such because they aren’t familiar with the traits of mental illness, Autism/Asperger’s,  or that masking behavior often comes off as “weirdness”.

When it comes to employment and Autism/Asperger’s, a few of us middle to high-functioning individuals hold down jobs. But most of us don’t. I have read that nearly 90% of us are under-employed or un-employed all together, so that leaves a mere 10% that is functioning at what is a full time job I would imagine. And I bet that that 10% that is managing to hold down a full time job is still struggling. I wonder if there are any Autists/Aspies who work full-time that aren’t struggling in some way when it comes to their job/career? I don’t know the numbers for the mentally ill, but I would assume it is better, as mentioned before there is medication for these individuals that can often help them to maintain employment, and even a regular full-time job all together. Unfortunately my medication doesn’t work well enough, and that may be because the symptoms I have are more related to my Aspies than a separate mental illness.

When it comes to me personally, there is some work I can do which allows me to pay for somethings, but not enough, which in developing nations means I have to rely on other means and other people all together. With my meager earnings, along with my small disability check, I can maybe secure cheap housing in South America or Asia along with food and medical care, but not in the US or the UK.

A friend of mine who is an Aspie like me and with whom I have a lot in common with, and whom helped me get a diagnosis, said that disability saved her. I believe it is saving me as well, and others who are able to get it that are like me. But this process was excruciatingly tough and if I hadn’t had a supportive family and an inheritance, I think I may possibly be dead. I believe this is true for those like me. It is a Godsend in many ways that I have been awarded disability, but this took years of getting fired from jobs, having to rely on and often live with my family, being on psychiatric drugs, several diagnosis and hospital stays. I was able to hold down a job sometimes, sometimes not. I was able to secure housing on my own sometimes, sometimes not. I was able to maintain friendships and relationships for some periods and function socially sometimes, sometimes not. For those who don’t have the resources of family, I really don’t want to think about what happens to them.

If you are reading this and you don’t have family that helps you, my sympathies are with you and you can message me and I will try to help you in anyway I can. I urge you to apply for disability, to maintain every record that you can of all you have struggled with when it comes to employment, housing, and psychiatric diagnoses/ drugs/hospital stays/therapy. I urge you to get a lawyer. The process will be long and like me you will likely be turned down more than once, but if you can hold on somehow you can get it. I did.

You can still work while on disability, which is kind of ironic in and of itself. But the kind of work you are allowed to do can’t count as “substantial and gainful activity”, which given the nature of my work and the usual underemployment of Autists/Aspies and the mentally ill, qualifies as this. You can even make up to a thousand a month or so and still keep your benefits. I likely won’t be making this amount unless by some miracle I become much better and maintain steady, somewhat well-paying employment. But the sad reality is that given my past work and mental health history, and present mental state, this won’t likely change. And beyond my mental health conditions and Aspies, I plain don’t think I am cut out for the typical work environment. I imagine there are those who don’t have Autism/Aspies or mental health conditions at all that aren’t cut out for the typical work environment. They may end up in the very same situation we are in, perhaps even worse as they are functioning in all other areas better than us, so no one really understands what their problem is and they must become self- employed like I am, but to the extent that they make a good amount of money, or rely on a spouse/family.

I sometimes worry due to my conditions I won’t be able to travel anymore or won’t want to. I fear that I may not be able to become the nomad I really want to be. While you can legally travel to and live in other countries while on disability, some may say “you’re not really disabled  or on the Autism spectrum if you are able to travel”, and they may even get upset at the notion. But in my opinion and in the opinion of some others I have run this by, boarding a plane, taking a train or bus and managing to get along in a different culture (which actually ends up being good for many Aspies, see my blog post about this), does not mean that you can get a long with supervisors and co-workers, do every task correctly that you are assigned, work well with the public, and all in all emotionally withstand the demands of even a part-time job.

The last part-time job I had I was fired from for reasons I don’t entirely understand. The way in which I was fired was passive-aggressive, unprofessional, and downright cruel. Being that I liked the job and thought I was doing well, I was angry, confused and hurt. This led to a downward spiral where I hurt myself and was considering ending things all together. I won’t go into detail, but let’s just say I ended up hospitalized and was given a diagnosis of bipolar 2, which may or may not be accurate. See my disclaimer on my diagnoses.

When you function just enough but not entirely, there are very few resources for you. Its like being middle or working class- you make enough to eat and have housing, but not enough to qualify for say, enough help with college scholarships. You make enough to have a car, but not a great car. You can’t get food stamps but you can’t get gourmet meals. You make too much for Medicaid but not enough to pay for expensive hospital bills.

While it is terrible to be on the extreme side of being mentally ill/Autistic/Aspergian, and you could very well end up dead, you are obvious enough to get noticed and more likely to get help that you don’t have to fight for. If you are on the very functioning end, you don’t have to fight really at all. You must fight like HELL in the middle, and often you must choose a side to the detriment of your already compromised mental health. After years of struggling to function, to be an adult, and suffering extreme emotional exhaustion, I have been relinquished to the world of the low functioning.

People will look at me strangely when I say I am on disability, and they do anytime I tell them I have Aspies already. But they aren’t in my head, they haven’t gone through what I have gone through, and they most certainly haven’t been in the middle or they would understand.

For those of you in the middle, falling through the cracks- I sympathize with you so much. I wish I had enough money to save all of you. And there is nothing wrong with giving up on traditional life and going on disability or relying on family and inherited money. It may very well be the only reason you stay alive.

It is for me.

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