Broken families, and under-diagnosed mental illnesses.
By: Abigail Neely
Tags: Mental Illness, Rant, Parenting, Autism, Mental Health

I am currently in the process of being tested for ASD. If you don’t know what that is, “Autism Spectrum Disorder” is a disorder you are born with. People with ASD have brains that are just built differently than what many in the community call “neurotypicals”. If you have one of the few neurodevelopmental disorders (ASD, ADHD, dyslexia etc…), then your would be considered “neurodivergent”. I am neurodivergent, and I embrace the term. I know that there are no magical cures for my brain, and that it is harmful to say there is. I was diagnosed with ADHD around third grade, so I’ve had a while to accept it.

Many people think it’s simple to be tested for something as common as autism. They would be wrong. If you were born a female, then there is no simple answer for you. You see, pretty much all of the research on autism was done on autistic boys, so most of the listed symptoms aren’t even experienced by girls, or they are better at hiding them. When a boy is quiet, teachers think there is something wrong, but when the same thing shows itself in a girl, they are just shy and polite. There is also the fact that girls have a much easier time hiding it, and they can often go years acting perfectly “normal”.

The best time to get diagnosed is when you are an infant. Well, since that isn’t super plausible, “most” are diagnosed when they are toddlers to early elementary. I put “most” in quotations because people who are diagnosed that early are pretty much all boys. Sometimes girls are diagnosed that early, but they are mostly high support. This created the belief that more boys have autism but girls have it worse. Not true at all, and so incredibly harmful.

So here I am at 17, finally going through the process to get a diagnosis. I would like to make sure all of my readers know that it was only by my advocation that it is happening at all. I did all of the research on my own, I read tons of articles on girls with autism. I was the one who brought it up to my mother and was told “what would a diagnosis even do for you?”. The same thing my psychiatrist said. I will tell you what it would do for me: give me validation so I don’t continue spending years of my life thinking there is something wrong with me; get me the supports I need; let me explain my needs without stammering over words trying to explain what I’m feeling without acting like I am self diagnosing; and so much more.

I will admit, it is so frustrating. My mother didn’t do any research on her own. She told me she would do research after the testing was done. I struggled to see how that was helpful because the truth was, I was experiencing the same things people explained in those articles. I thought it would be more helpful to just do research now so I could be supported. This is still an issue. If I want my mother to do any research I have to send articles to her. She still insists on doing research on BPD when an autism diagnosis cancels out that “diagnosis” (I would like to point out that you cannot be diagnosed with a personality disorder until you are 18, so just having some signs of it does not mean I have it).

This is an ongoing struggle in my home. There is me on one side who is trying to advocate for my needs, and my mother on the other who is just tired of having to support me. I understand how exhausting it is to deal with, but I feel like that isn’t an excuse to ignore my needs in favor of having your boyfriend over five nights a week.

I don’t want to sound like I am complaining and blaming everything on my mother. I am not. I understand that she also needs her needs met, and that it is really tiring to deal with my mental health all of the time. I can see that, which is why I try to stay out of the way. I deal with her boyfriend being over all of the time, and I give her space. I find other ways to cope and different supports. I use skills that I learned in therapy and use distress tolerance when I need to.

But, you see… we get into fights all of the time. I have a bad habit of masking my behaviors (hiding stimming, trying to act neurotypical…). Well, in fact, it is kinda what society expects from someone like me. To hide my true self because it is a burden to those around me and I won’t be accepted so I should just try to fit in. To tie that in, I have a hard time not masking around people I don’t explicitly trust. Like mom’s boyfriend. Hiding it makes me irritable, and super sensitive to sensory things. I know that some people think that to avoid this I should just loosen up and be myself, or whatever. That isn’t how it works. I’ve been hiding it for my entire life, so why should I feel comfortable “opening up”. We’ve been taught that those who are different are lesser than and need to be treated like children. They aren’t as important as “normal” people are. Why wouldn’t I be terrified to show that I am different?

I sometimes have a really hard time being around her boyfriend. I feel like mom is telling him all about how much of a burden I am (intrusive thoughts am I right?) and how I am the worst. Sometimes I can tell that he has heard bad things about me. People start acting differently around you. I once asked him to please close a cabinet (in a very polite way) as open cabinets really bother me, and he did not respond when I asked, so a moment later I nicely asked again and he looked up at me and said roughly, “I heard you.” Well, how am I supposed to know if you didn’t acknowledge that you had heard me? Being ignored when I am asking for something or saying something does not make me want to be around someone, let alone drop my carefully build defenses.

Okay so the problem here is (with the cabinet) that I really hate when people leave cabinets open. My mother has a friend that walks into our kitchen and opens all of our cabinets and then just pushes them a little bit so they aren’t all the way closed. Our cabinets are kinda crappy so they stay open at any angle you leave them. Whenever that friend comes over I go slightly insane. This has been going on for years. My mother does it too. She just leaves them open. When I kindly ask for them to be closed she gets mad at me because it’s my problem so why should she do what I’m asking. Her argument is that I could just get up and close them myself if it bothers me so much. I don’t understand why it’s so hard for her to just go the extra inch and push it closed. You see, if this is what happens over such an easily fixed problem, if that slight accommodation is too hard to make, then how do we solve actual issues?

The answer is: we don’t. We fight about things all of the time. If it isn’t my mother’s way then it cannot be done. I often try to meet in the middle and come up with something that would work for both of us. I use my coping skills during these conversations so I can try to stay as calm as polite as possible. Yelling will do no good, so I try to make myself as clear as possible and be willing to work with her. Well, she is not willing to work with me so it does not seem to be working. She starts getting mad at me and yells. I get told that I’ve done everything wrong. How dare I not wash the dishes or vacuum the house? Well, the vacuum is an easy answer — it’s way too loud and it makes me have panic attacks so I prefer not to use it because it is really hard for me. And the dishes? I actually enjoy doing dishes, and I do them. Most of the time.

At this point in a conversation, I usually start crying. I probably will say something about how I feel like a burden (which I do, and that is a problem according to my therapist), my mother will ignore that and tell me I’m being manipulative (an awful thing to say to me since it is literally one of my biggest fears to be anything like my father). After this my mother will just start ignoring me and will tell me that she just doesn’t have anything else to say. That or she will yell at me about how I am overdramatic and that when things don’t go my way I just start going off about how things aren’t fair.

What I am saying during that is probably just a continuation of me explaining why I feel like a burden. I usually bring up how I have always felt like my mother loves my sister more than me. I understand it’s not the most productive conversation. Honestly though, I think I bring up the same things every time not to be manipulative, but to just try to get her to understand that I honestly feel that way, and I have for years. I’m not sure what I want from those “conversations”, maybe some validation and compassion? A return of the empathy I give out so easily?

After this I will be the first one to apologize. Well, actually I will be the only one to apologize. I will walk over to her soon after our fight and tell her how I was wrong (everything I said was wrong and I should never tell her that how she parenting doesn’t work for me… and I should never, ever send her another parenting article on a method I think would work really well for me). She will agree that everything I said was wrong, and she will not apologize for her side.

I have just realized that most of the time I am right. Not in a “oh I’m always right” kind of way. Sometimes my method of getting it across is skewed, but what are you to expect when I am desperate? The feeling and emotions, the needs and boundaries I am trying to convey are completely valid. I am not the one in the wrong. I do not need to apologize for stating my truth. I don’t need to apologize for how I reacted to blatant invalidation. Mom never listening to me is not my fault. It is not my responsibility to validate everything mom feels when she doesn’t even truly validate my existence. I am expected to act “normal” but I am not normal!

I am beginning to understand why I have always hated family therapy so much. Therapists taking my mothers side, and not listening to what I need is not okay. I am always the one being told I need to fix a behavior, always the one being told off, but I have never — not once — seen a therapist tell my mother that she needs to change her behavior and how she deals with issues. Because no matter how much I change and warp myself, I will never be what my mother wants me to be. I cannot be that, because even she is not that.

To any parents reading this: your child is not an extension of you. You do not get to control them and act like they are yours to control. They are not. They are their own people, with their own experiences. Rules work best when they are made in collaboration, and social isolation is never an acceptable punishment. Yelling and mocking do nothing but ruin your relationship. If you want a relationship with your child once they leave, then you better treat them with respect and dignity. Treat them like a person, not an object.

I will continue sharing my experiences, and what I learn in therapy.

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