Autism Diagnosis and Rediagnosis: Do Labels Matter?

Posted on by Astrid

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

Posted on by Astrid

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.

I’m Not Broken (And Neither Is Anyone Else)

Posted on by Astrid

A few days ago, I got a notification on WordPress that someone had liked a post of mine called “People Aren’t Broken”. It was probably on an old blog of mine and I can’t remember exactly what the post was about. From what I remember, it was written in response to a person being officially diagnosed as autistic and seeing this as a reason they weren’t “broken”.

Indeed, before my autism diagnosis in 2007, I always thought I was “broken”. Same once my autism diagnosis got taken away in 2016. I still had a personality disorder diagnosis (dependent personality disorder and borderline traits), but I believed strongly in the stigma attached to it. That wasn’t helped by the fact that my psychologist at the time used my diagnosis to “prove” that I was misusing care. I wasn’t.

Today, I found out people applying for benefits are completely screened by some kind of information gathering agency. It made me worry that the benefits authority or long-term care funding authority will do the same, even though I already have both.

It’s probably the same internalized ableism (discrimination against people with disabilities) speaking up that tells me that, if I don’t have a “legitimate” disability (like autism) that warrants me getting care, I’m just manipulative and attention-seeking and generally broken. I am not. And neither is anyone else. Including those who actually do have personality disorders.

This post was written for today’s Five Minute Friday, for which the prompt is “Broken”. Of course, I could have (should have?) written a more spiritual post and, from that perspective, everyone is in fact broken. What I mean with this post, though, is that there’s nothing that makes certain people broken based on disability or diagnosis.

X-Patient: Psychiatric Rehabilitation and the Recovery Movement #AtoZChallenge

Posted on by Astrid

Okay, welcome to my letter X post in the #AtoZChallenge. I’m not really motivated for this one, but I don’t want to give up on the challenge either. My topic today doesn’t really fit in with the rest, but well. Today I’m writing about what it is like to be an ex-psychiatric patient. In the anti-psychiatry movement, some people choose to write this without the E, so it counts.

When I first heard of psychiatric rehabilitation around a year into my psychiatric hospital stay, I hated the entire concept. It was all based on training people to be more independent whether they wanted to or could do this at all. I knew already that I needed long-term care, so I was like: “Didn’t I just complete 18 months in a training home only to have it fail?”

Then, a few years later, I heard of the recovery movement. Unlike psychiatric rehabilitation, this is entirely patient-led. I signed up to participate in a recovery course. What surprised me immediately was the fact that my mental hospital chose to only allow those staying there as inpatients on the course. They later started a course for outpatients too. I loved this course. Going into long-term care wasn’t frowned upon but seen as a means of getting my life back on track. Unfortunately, that’s not how most professionals, at least on my last unit, saw it.

A few weeks ago, I watched a short video on a Center for Consultation and Expertise case in which the recovery viewpoint was misapplied to an autistic man. Indeed, I’ve never felt that concepts like “rehabilitation” apply to autistics. I mean, the idea that we all want a meaningful life, is good. However, considering a meaningful life as the same as independent living, is in my opinion rather misguided.

After Diagnosis: Dropping a Mask or Seeking Excuses?

Posted on by Astrid

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.

Guilt Won’t Help Suicidal People

Posted on by Astrid

Yesterday Ashley shared a piece about a blogger friend of hers who had died by suicide and the guilt trips she received on Twitter. The person had scheduled her post for after the fact, so she most likely didn’t see the guilt-tripping. However, this got both Ashley and me thinking about guilt tripping not being a suicide prvention strategy.

This person had written that her intent was to be hit by a train. This led people to blame her for traumatizing the train driver. While it is true that train drivers are often traumatized by people running in front of their trains, it is equally true that guilt won’t help suicidal people.

I was in a suicidal crisis in 2007. I also intended to be hit by a train. I disclosed this to my support worker in a voicemail message, which people overheard, as I was on a bus. They called the police, who called someone called a community physician. This doctor was supposed to liaise with the mental health crisis service. For some stupid reason, the police in that city can’t directly call the crisis service. Anyway, this doctor told me I was making people feel responsible for me.

Well, let me tell you, in a depressive state or any state that can lead to suicidality – mine was diagnosed as adjustment disorder -, this won’t help. This will, if anything, just tell the sufferer that their suffering isn’t as important as someone else’s suffering. It will also most likely reinforce the prevalent idea among depressed people that they aren’t worth much, which may further reinforce their suicidal ideation.

I also want to say there is no way of dying by suicide that won’t affect others. Then again, there is no way of dying that won’t affect those lefte behind.

Some people think that running in front of a train is extra selfish. Well, once I was in the hospital, I spoke to my mother. She told me that I was selfish, because if I died by suicide, my parents would have to pay for my funeral. Let me tell you, this only made my depressive mood worse.

Sometimes, it can help suicidal people if you gently ask who they will leave behind, so that they might realize they still have loved ones. It didn’t help me. I didn’t have friends at the time and my family were, like I said, very unsupportive. In any case, don’t appeal to someone’s sense of responsibility or selflessness. That’s only going to make them feel worse and it won’t actually help those who would be affected by someone’s suicide. People who are suicidal benefit from support, not judgment or guilt tripping.

Autistic Pride Day 2019: Reasons I’m Proud of Myself

Posted on by Astrid

It’s June 18, which means it’s Autistic Pride Day. I have known this for years, but didn’t realize it today until I saw another blogger share about it just about an hour ago. I don’t really know what to write about for today. I could list positive traits of autism, but others have probably already shared those. Besides, I don’t pride myself on my autism, despite not seeing it as a negative thing. I am proud of myself just for who I am. For this reason, I am going to list some reasons I’m proud of myself. Autism, after all, is part of who I am.

1. I am self-aware. I had a meeting today with a care consultant for a possible living facility for me. I was quite able to articulate my needs and strengths. I am increasingly aware of those.

2. I am resilient. Some people don’t think so, as I’ve had multiple mental health crises. However, I always veer back up.

3. I am determined. I don’t let others tell me what’s best for me. Again, this isn’t always seen as a positive characteristic, but so what? I think these people are just trying to get me to be submissive to their ideas of what I should be.

4. I am honest. I can be blunt, but I always speak my mind.

5. I am open to new experiences. This may contradict some common autism stereotypes. In fact, when I first heard of autism, it was explained to me as “being afraid of new things”. I am not.

6. I am affectionate. I do display affection in my own, autistic way, but I can definitely show love and affection for my husband and others I care about.

7. I am creative. Not in the sense that I can tell imaginative stories – my fiction has a horrible lack of imaginativeness to it -, but I think outside of the box.

8. I can be focused. That is, if something grabs my attention, I can completely hyperfocus on it. This can be a negative characteristic, but it definitely helped me during my school years and helps me focus on what I like now.

What are some reasons you are proud of yourself?

Confessions of a New Mummy

Mental Illness Labels

Posted on by Astrid

Yesterday, Sue over at My Loud Bipolar Whispers wrote a very interesting post on mental illness labels. It is definitely very inspiring to read how Sue overcomes the stigma and self-stigma of mental illness labels. I must admit I’m still caught up in mental illness labels at times. I started this blog in part to help myself overcome this limiting mindset where a diagnosis defines me. As such, I thought I’d do a similar post to Sue’s.

Over the past nearly twelve years that I’ve been in the mental health system, I have accumulated a bunch of mental illness labels. I am too lazy o list them all, but they included adjustment disorder, impulse control disorder NOS, dissociative identity disorder, PTSD, borderine and dependent personality disorder and depression. These labels define me in a sense, but in a sense, they do not. After all, some of these diagnoses were not just given to me but taken away again later. As such, I’m not supposed to dissociate anymore, as DID is no longer among my mental illness labels. Well, here we are, all 25 or so of us. I hear my former psychologist saying that I make up the DID because of having read up on it too much. Ironically, she was the one most eager to give me new and exciting mental health diagnoses.

Mental illness labels have a function in getting insurance to pay for treatment. In addition, they may guide what treatment and support you can access. Self-labeling (self-diagnosis) may have the added benefit that you can access support without the approval of a mental health professional. That’s how I access support geared towards people with DID.

However, mental illness labels should not be limiting my experience of who I am. I am more than my mental illnesses. Here is a list of labels I’d like to be known for.


  • Wife

  • Daughter

  • Sister

  • Friend

  • Writer

  • Blogger

  • Creative

  • Introvert

  • Compassionate

  • Intelligent

  • Honest

  • Former psychology major

  • Disability rights activist

  • Mental health advocate

  • Survivor

What labels do you define yourself by?