Autism Diagnosis and Rediagnosis: Do Labels Matter?

Earlier today, I saw a blog post about adjusting to a late autism diagnosis. The author didn’t receive her diagnosis till her mature years, while I was 20 when first diagnosed as autistic. Still, I could relate to some of the things she discusses.

Particularly, I related to the fact that diagnosis changed my perspective in quite a radical way. I was no longer just a bad, difficult person. I was autistic. Always had been.

As regular readers of my blog might know, I have had multiple autism assessments since my first diagnosis in 2007. The reason for this is complicated and mostly related to the fact that professionals kept questioning my diagnosis and wanting further testing. At one point, the records of my most extensive assessment disappeared due to a change of electronic record keeping systems and this led to my then psychologist jumping at the opportunity and removing my diagnosis altogether.

Most autism support groups online are open to self-diagnosed individuals. The main one I was part of at the time, however, I found out, was not. I was heavily criticized and distrusted by the other members after I’d lost my diagnosis. They thought my psychologist had finally unmasked me as someone with a personality disorder rather than autism.

Of course, I also needed an autism diagnosis in order to get the right support. With just borderline and dependent personality disorder on my file, I would be treated much differently by the mental health agency than with autism as my diagnosis. I wouldn’t be able to get support from the intellectual disability services agency either. Thankfully, I got my autism diagnosis back.

Interestingly, the psychologist who removed my autism diagnosis, always said that diagnoses didn’t matter, yet she was the one constantly throwing around new diagnostic labels at me. In a sense, an official diagnosis doesn’t matter, in that self-diagnosis is valid too, at least outside of the need for services. For instance, I self-identify with a dissociative disorder even though I haven’t had this official diagnosis in over eight years. However, to say that labels don’t matter and that all that matters are the symptoms, as she said, is quite frankly wrong. Especially in the context of the need for services.

After all, I am the same person with the same symptoms whether I am diagnosed as autistic or as having borderline and dependent personality disorder. The treatment approach is quite different though. With autism, I need structure and a fair amount of support. With BPD and DPD, I mostly need to be taught to self-regulate by being made to take responsibility. Of course, in an ideal society, services aren’t rigidly based on someone’s diagnosis, but in our current healthcare system, they are. Because of this, I am so glad I currently have a well-established autism diagnosis and that my current support team at least don’t question it.

This Is “Profound Autism”?: Reframing the Discussion Around Complex Care Needs

A few days ago, there was a discussion on the Autism Science Foundation’s Facebook page in which parents of autistic adults with complex care needs were describing their children with the hasthag #ThisIsProfoundAutism. I asked to reframe the discussion to include people with multiple disabilities including autism in general, because it is rarely (but not never!) autism, no matter how severe, alone that causes a person to be completely dependent on caretakers. I then explained that due to the combination of my disabilities, I need 24-hour care, including one-on-one for most of the day.

Not surprisingly, I was quickly met with the question whether I was saying I needed 24-hour help with basic tasks such as eating, bathing, dressing myself, etc. Well, the Autism Science Foundation page is a public Facebook page and I didn’t want the people on my friends list (including immediate family) who don’t know this, to judge me for it, but the short answer is yes. While I, like presumably most “profoundly autistic” people who don’t have physical disabilities, am physically capable of eating and dressing myself for the most part with some difficulty, my executive dysfunction means I still need help with them. As for bathing, well, I basically need someone to wash me, because, while I can physically hold a washcloth in my hand, I don’t have the organizational skills to actually work out the ritual without a ton of supervision and even then it’d lead to a lot of meltdowns.

I did, incidentally, point out that I recognize intellectual disability as a valid additional disability that needs to be taken into account when I asked to reframe the discussion. After all, that’s most likely what’s causing these autistic adults to be unable to understand instruction and to be completely dependent. For me, it’s a combination of executive dysfunction, which is a direct autism symptom, blindness, mild cerebral palsy, and other things.

I also do recognize that the need for support with severe challenging behavior is not the same as the need for help with basic personal care. One does not exclude or necessarily include the other and one is not more valid than the other. I, for one, am somewhat more independent in terms of eating, dressing and bathing than my severely intellectually disabled fellow clients. I am a lot more dependent where it comes to the effects of my challenging behavior.

I also do not mean to say that autism on its own cannot possibly cause a person to need a lot of care. It can. I am reminded of a girl I read about on Dutch social media many years ago, who indeed had hardly any functional communication skills but did have an IQ above 85. She, unlike me, didn’t have any additional disabilities. She was completely left behind in the care system: she was too severely disabled for traditional child and adolescent mental health services, but her IQ was too high for intellectual disability services. Really, I should not have called for reframing the discussion to include those with multiple disabilities, but those with complex care needs in general.

That being said, I strongly disagree with those people who say that just because I can write, means I should have ignored the conversation, since it clearly wasn’t meant for me. The fact that I can write, does not make me not dependent on care providers and does not mean policy or lack thereof won’t affect me. I am autistic and that, along with my blindness and other disabilities, causes me to need the extensive care I get now.

After Diagnosis: Dropping a Mask or Seeking Excuses?

I didn’t end up writing anything for the second and third prompt in the 10-day writing challenge. I also skipped the Insecure Writer’s Support Group day yesterday. It wasn’t really that I felt unmotivated or uninspired, but I was busy doing other things.

For example, I read a post on Facebook by a Mom of a neurodivergent child asking the autistic community whether it was possible that the child could be faking autism. That had me thinking. The short answer is that it’s highly unlikely. It is much more likely that, upon learning you are or may be autistic, you drop the mask.

I was self-identified as autistic for some years before I was formally diagnosed. However, my parents and high school tutor shamed me out of seeking an official diagnosis, claiming I was a hypochondriac for believing I’m autistic. Never mind that hypochondriasis is as much a mental condition as is autism.

At the time of my official diagnosis, I was resisting it a bit. I was in college with a psychology major and I didn’t want a diagnosis to stand in the way of my completing the program. Never mind that I was already failing and a diagnosis in fact helped me get some accommodations.

Then after I was diagnosed with autism, I started dropping the mask. Some people, including my parents and staff at the time, thought I was using my diagnosis as an excuse. Well, I wasn’t. I was experiencing what eventually turned out to be extreme burnout.

To get back to the topic of “faking” autism, I won’t deny that a small percentage of people may want to fake a disability to get services or financial help they don’t need. Others might be encouraged by family or friends to “just” go on disability. At least, I know some people who say they experience this. However, with how strict the social security and care systems are here, it is highly unlikely that someone would be granted benefits or care based on just a diagnosis. After all, a diagnosis is just a label.

Besides, said child had already been diagnosed with a neurodivergent condition. More labels doesn’t necessarily mean more care. It can mean more self-knowledge. It did in my case at least.

For example, I’ve over the years been given at least ten different diagnoses. Some may be correct while others most likely aren’t. Exploring these conditions did give me more understanding of myself. Especially with autism, there is a very positive community surrounding it. That definitely helps me finally find my tribe.

Today’s prompt in the 10-day writing challenge was “After”. The idea of the challenge is to write for five minutes. This post took me much longer, but that’s okay too.

Dear Autism Parents: On Unconditional Acceptance

I just read an essay in What Every Autistic Girl Wishes Her Parents Knew and it touches home with me. In it, the author, Haley Moss, mainly describes how she feels parents need to ucnonditionally accept their autistic daughters. She particularly emphhasizes the need to support the girls’ special interests even if they’re not age-appropriate or girly. Boy, do I want to tell my parents this. It’s too late now, as I’m 32 and have half a lifetime of conditional love behind me already.

Moss herself too was encouraged to develop age- and gender-appropriate interests as a child. She recounts a fourth grade memory of being advised to trade her rare cards for Bratz dolls. I have no idea what they are, but I remember in fifth or sixth grade also being encouraged by my mother (in not so subtle ways) to trade my Barbie dolls for pop music CDs. After all, Barbie dolls may be girly but they’re not deemed appropirate for an eleven-year-old.

The negative effects of one such incident, like Moss experienced, can be undone by a greater occurrence of open acceptance of the autistic’s special interests. For example, Moss’ paretns eventually affirmed her interest in video games. In this respect, I felt generally okay about my interests in fifth and sixth grade, because, though my mother did not support my playing with Barbie dolls, my father did support my drawing maps.

As a general rule though, I have commonly felt only conditionally accepted by my parents. This is reflected in constant victim-blaming when I was bullied. They were at least somewhat consistent in that, in that at least my father spoke negatively about the intellectually disabled girl whom I bullied too. Of course, he set an example of ableism by doing this as much as my parents did by victim-blaming me.

When I went into college to major in applied psychology, I still got my parents’ reluctant approval. After all, though my major wasn’t that well-liked by them and my college wasn’t as prestigious as they had wanted for me, it still was college. Since having experienced my breakdown in 2007, it’s pretty clear my parents are not there for me anymore. That’s sad, but it’s true.

The saddest part about What Every Autistic Girl Wishes Her Parents Knew is, unfortunately, that those parents who most need to hear the messages in it, will not read it. My parents don’t even think I’m autistic despite my having been officially diagnosed half a dozen times. Other parents may’ve gotten the diagnosis but choose to join the likes of Autism Speaks and shout “You are not like my child!” at every autistic adult trying to educate them about acceptance. That’s so sad. However, if some parents are helped by this blog post or by the book in showing unconditional acceptance to their children, that’s already good.

Dropping the Mask: Does It Take a Diagnosis? #TakeTheMaskOff

Today, the theme for #TakeTheMaskOff is diagnosis or self-discovery and its effects on masking. This is applied mostly to the experience of being autistic, but I can relate to it from a trauma survivor perspective too.

I haven’t yet read any of the other contributions for this week, but I assume the idea behind this challenge is that discovering you’re autistic, either through professional diagnosis or not, can help you drop a facade.

This is definitely true for me. When I was first diagnosed with autism in 2007, my staff claimed that I was using it as an excuse, because I reacted more to for example loud noises than I’d done before diagnosis. Similarly, my parents claimed that I was over-protected by the staff who felt I’m autistic and this led to my psychiatric hospitalization in November of that year.

To be honest, yes, I may’ve started to use autism more as an explanation for my behavior once I was diagnosed than I did pre-diagnosis. Note that I say “explanation”, not “excuse”. I don’t feel I need an excuse to act like myself, unless acting like myself were harming other people. Saying that we use autism as an excuse for our behavior is really saying that we should conform to non-autistic standards of behavior at any cost. Autism is an explanation for why I can’t conform to these standards, but even if I could, that doesn’t mean I should.

Then again, once my autism diagnosis was taken away in 2016, I did feel like I needed an excuse. And so did many other people. I was kicked out of autism communities that I’d been a valued part of for years. Suddenly, I’d been faking and manipulating and “acting autistic-like” all those years rather than just having been my autistic self. One Dutch autistic women’s forum’s members and admins were notorious for spinning all kinds of theories on why I’d been pretending to be autistic all those years and had finally been unmasked.

<PAnd at long last, I started to believe these people. I started to believe that self-diagnosis may be valid for other people, but it isn't for me. I started to wonder whether my parents were right after all that I'd been fooling every psychologist and psychiatrist before this one into believing I'm autistic.

This process of self-doubt and shame led to my first real episoede of depression. After all, if I’m not autistic, why did I burn out and land in a mental hospital? I’d been diagnosed with dependent personality disorder by the psychologist who removed my autism diagnosis, so were my parents right after all? I suddenly felt like I needed an excuse to act autistic-like, as if being autistic is indeed less than, not just different from being neurotypical.

I sought an independent second opinion and was rediagnosed with autism in May of 2017. I still am not cured of the idea that it takes a professional diagnosis to “excuse” a person from acting non-autistic. I don’t apply this to other people, but I do still apply it to myself and that’s hard.

I use this blog to counteract this self-stigmatizing attitude. This, after all, also applies to my status as a trauma survivor. I got my autism diagnosis back, but I never got and most likely never will get my trauma-related diagnoses back. I still mask, hiding my trauma-related symptoms when I can. And that’s not usually hepful in the long run.

I Am Autistic #SoCS

I am autistic. Or I have autism, as politiically correct parents of autistic children would say. I prefer “autistic”. After all, autism is an essential part of my identity. It’s not like labels don’t define me and are just there for insurance coding purposes. Yeah, well, diagnoses do not define me. I am, after all, also multiple even though I don’t have a diagnosis of dissociative identity disorder anymore. Others do not define me. But my characeristics, including being autistic, do.

Saying “I am autistic” rathr than “I have autism” is preferred by the majority of autistic people. We also refer to ourselves as “autistic people” or even “autistics” rather tha “people with autism”. This is called idetity-first language, whereas “people with autism” is called person-first language and is politically correctly preferred by people wanting to erase the impact of autism.

I know, there are some situations in which a person may prefer person-first language regarding their own disability or identity. I don’t think this is wrong at all. However, people without said disability or belonging to said group should not dictate how we identify.

Identity-first language does not mean we can be called whatever the heck someone wants to call us. For example, a person with an intellectual disability should never be called “retarded”. That’s a slur. Even if said person has reclaimed that word – the R-word has not been reclaimed yet that often, but it might get to this point -, you cannot assume as a non-disabled person that you can just go about calling them the R-word. If in doubt, ask what a person wants to be referred to in regards to their disability or identity.

And of course, I want to be referred to by name most of the time. Unless another part or alter has taken over, but then some of them will be rather in your face about their name.

Don’t assume that political correctness is always preferred, but don’t assume anything really. We are all humans, all different and that’s valid. We should be loved and respected for who we are.

Linking up with Stream of Consciousness Saturday (yeah I’m late). The theme for this week is “-ic” or “-ical”.