Autism and Friendship #Write31Days

Welcone to day one of #Write31Days for 2017. This month’s theme on my blog is autism. One of the most characteristic impairments in autism, at least according to diagnostic criteria, is an impairment in social interaction skills. In DSM-IV, the diagnostic manual under which I was originally diagnosed, failure to develop peer relationships appropriate to developmental level was one of the impairmetns under the social interaction deficits criterion. “Peer relatioships” refers mostly to friendships, though I reckon it can refer to romantic relationships in adolescents and adults too. Today, I will discuss how autism impaacts my understanding of friendship.

Many years ago, I read an article by famous autism expert Tony Attwood on the topic of development of friendship skills. A typically developing child starts to develop friendship skills at around age three. They realize that friendship requires some level of turn-taking but their approach to this is egocentric, based on for example sharing of material goods or playing together. When someone asks why a person is the child’s friend, the child at this stage would typically respond: “Because they live next door.”

Children between age three and six are typically at this level. Autistic children (and in a way even adults) typically remain at this level longer. When I was nine, for example, I’d consider someone a friend because they gave me candy. Admittedly, I’m still at this level in a way, though I realize this is inappropriate. For example, when my now husband said that he was in love with me, I wasn’t sure whether to reciprocate it, since I didn’t know whether I liked him just because he was the only one who’d visit me in the psychiatric hospital. Also, I still can’t sem to move away from materialistic aspects of friendship like sharing candy.

At around age six, typically developing children move into the next level of friendship skills, which is based on shared interests and games. When asked why someone is a child’s friend, a child at this stage would say: “Because they let me play the games I want to”, “Because they’re nice to me”, etc. I relate to this level of friendship too.

Another criterion of autism in DSM-IV was lack of social reciprocity. This means that an autistic person doesn’t understand age-appropriate rules of give-and-take. Many autistic people can come across rather self-centered. So do I. For exampel, I rarelys hared candy (here we go again!) in the institution, even thoug I did accept it from others when offered. Give-and-take, however, seems not just based on material things and there aren’t many clear-cut rules for it.

I have a rather literal interpretation of reciprocity: when my husband, for example, gives me something, be it material or immaterial, I have to give him the same back. As such I feel extremely bad about being dependent on my husband for many things, like transportation, food, etc. He says that I give him love in return, but I barely understand the concept of love.

31 Days of Autism Landing Page #Write31Days

Welcome to my #Write31Days for 2017. I’ve not written regularly on this blog, or any blog, in almost 1 1/2 years. With #Write31Days, I’m attempting to change that. For those who don’t know, I participated in this challenge in 2015 on the theme of mental health. It’s a challenge where bloggers write a post every single day for the motnth of October. As such, it’s quite a huge challenge to take on for me – going from four posts a month or so to 31. Please all send positive vibes and have your fingers and toes crossed that it’ll work out – and hopefully give me a boost to blog again more regularly for the months after October.

For this year’s theme, I have picked “autism”. I know, I chose this for the #AtoZChallenge in April and failed, but I didn’t have a diagnosis back then to give me a reason to persevere. I do now. I mean, I know self-diagnosis is valid and, besides, I was formally diagnosed three times before. I had however internalized a lot of prejudice. Since this was the main reason for my not sticking to the #AtoZChallenge, maybe #rite31Days will be more of a success. I hope so.

In 2015, I wrote mostly infmrational posts on topics related to mental health, such as personality disorders. Though I will share the odd informational post in this year’s #Write31Days, I will mostly focus on my own lived experience as an autistic person. I will mostly pick my topics from the 30 Days of Autism Acceptance challenge. There are 32 topics in the challenge, since day 9 and 10 have two topics to choose from. Since I already wrote several posts based on this challenge though, I’ll have to be a little inventive too.

This is my #Write31Days landing page, where I’ll link to each day’s post so you can easily see them in one place. Enjoy.

Blind People Should

A few years back, there was a flash blog event that had autistic bloggers all finish the sentence “Autistic people should …”. I think the reason was to counter the hurtful search suggestions that Google made when people typed in “autistic people should”. I was reminded of this event when I read this weeks #theprompt, which is “should”.

I was also reminded of my own preconceived ideas about what disabled people should. A few days ago, I wrote to a disability support group on Facebook about feeling like I was setting a bad example for the disability community because I don’t work and spent years in an instituton. Shouldn’t I have to explain why I can’t work or live fully independently? The short answer is: no.

I was feeling like I should have a disability label to justify my every need because of what I learned whilst being part of E-mail groups run by the National Federation of the Blind, one of the two major organizations of the blind in the United States. This was in the early 2000s, mostly before I’d been diagnosed with autism. What I learned was that blind people, unless they have severe additional disabilities, which I’ll address later, should be able to achieve as much as sighted people do. For example, we should be able to read at the same speed, get around with a white cane completely independently, go to college (I think I picked up the term “college-bound” there), be employable, etc. I can’t do or be any of these things. Keeping the bar of expectations high was the motto of the parents’ organization of the NFB or so it seemed. I always imagined a candy bar put up on a star light years away and me being told to reach for the stars.

Sometimes, when people judged blind children or adults they only knew through newspaper articles not to be independent enough, someone would come up with the get-out-of-jail-free pass: “Maybe the person has additional disabilities?” This is a real possibility, since strangers usualy assume my every impairment is due to blindness despite my additional disabilities, so I assume newspaper reporters are no different. Yet does it matter? Should it? Apparently, sometimes.

In an old (like, late 1990s) issue of Future Reflections, the NFB’s magazine for parents of blind children, a blind adult reported his shame when he crticized parents of blind teenagers for not taking their teens to a seminar on independence. It turned out he was speaking to a roomful of parents of teens with multiple disabilities, so obviously they couldn’t bring their teens. I assume most of these teens had the type of disability that seems to have a monopoly on the term “multiple disabilities” when additional disabilities are involved: severe intellectual disability. After all, when I played the additional disabilities card after my autism diagnosis in 2007, I was told to look up Temple Grandin.

I may sound bitter and I shouldn’t be. After all, I do get the services I need now, even though they cater to, well, people with severe intellectual disabilities. That being said, I know I’m incredibly privileged now to have found my particular care agency, because most others would try to fit me into the mentally ill mold or the blindness mold or any other not-completely-fitting mold rather than looking at my needs.

This all brings me to my point, which is that blind people, autistic people, any kind of disabled people, any kind of people in fact, should not have to justify their needs. We are all human and all different, after all.

mumturnedmom

Book Review: Cruel to Be Kind by Cathy Glass

A few weeks ago, I found out about a new Cathy Glass book on an E-mail list I’m part of. Most of the members of the list are big Cathy Glass fans, but I’d never read a book by her. I badly wanted to. Cruel to Be Kind is Glass’ latest foster care memoir. I finished reading it on Saturday. Here is my review. It contains slight spoilers.

Synopsis

Cruel To Be Kind is the true story of Max, aged 6. He is fostered by Cathy while his mother is in hospital with complications from type 2 diabetes. Fostering Max gets off to a bad start when his mother, Caz, complains and threatens Cathy even before Max has moved in. Cathy and her family are shocked when they first meet Max. But his social worker isn’t the only one in denial; his whole family are too.

My Review

It wasn’t clear to me from the synopsis what it is that shocks Cathy about Max. I need to disclose it to make this review at all meaningful, hence my spoiler alert. The shocking fact is that Max is morbidly obese. Whether childhood obesity is a form of child abuse, is a controversial issue at least in the Netherlands. As an obese person myself, I was at first a little like “What’s the problem?”. Clearly this is me still not being fully accepting of the health risks of my own obesity. Max though is not just obese – he weighs twice as much as he should at his young age.

As is said in the synopsis, Max’s family and social worker are in denial. His mother and sisters are all morbidly obese too and, even though Max’s mother Caz has type 2 diabetes, she at first refuses to admit Max needs to lose weight.

I at first thought this would be a rather boring story, but it isn’t. In fact, it has many layers. I really got to know Max, Caz and Max’s sisters as they struggle with the generational curse of child abuse and domestic violence. I loved how Cathy attempts to portray most people she interacted with as humans with their strengths and weaknesses. For example, at first Caz was portrayed like a demanding, hostile feeder. In the end, she warms up to Cathy and discloses the dark secrets behind her overeating.

Overall, I really liked this book and it totally has me hungry for similar books. The only thing I really didn’t like about the book, is its title. Max at the end uses the phrase that you have to be cruel to be kind sometimes as an expression of gratitude for Cathy’s having put him on a diet. This phrase and the use of the words “tough love” in the same statement, did trigger me a bit.

Book Details

Title: Cruel to Be Kind: Saying No Can Save a Child’s Life
Author: Cathy Glass
Publisher: HarperCollins Publishers
Publication Date: September 2017

Read With Me

Flashbacks

A few days ago, I read an article on complex PTSD symptoms. I don’t have a diagnosis of coplex or regular PTSD and I realize there’s a lot of overlap with borderline personality disorder traits, which I do have a diagnosis of. Of course, I used to have a PTSD diagnosis, but that was removed because I did not have flashbacks that often. At least, that’s what I thought. One symptom after all that I completely relate to in this list, is having emotional flashback.

I never knew emotional flashbacks are a recognized symptom. I just thought they were covered under the umbrella of emotional regulation difficulties, which is a hallmark BPD symptom. As such, I usually saw complex PTSD as BPD when the person was believed to have been seriously traumatized. If a person was believed to just have had a few negative experiences, then they’d be diagnosed BPD. In my experience at least, the BPD diagnosis was used to deny I had been traumatized.

I don’t want to diagnose myself, of course, but the emotional flashback thing really struck a chord with me. Ever since I was a teen, I’ve experienced what I used to call “time shifting”. In a “time shifting” episode I’d have a kind of déjá vu experience. Usually, this was coupled with feelings of floatiness or unreality. The mental health term for this is depersonalization.

An emotional flashback is what it’s called when a person relives the feelings of past trauma. Boy, do I relate to this. Usually, I do have a slight inkling that I am transported back in time emotionally, but not always. I experience an intense feeling of helplessness, fear or sometimes despair.

Another type of flashbacks are visual flashbacks, when you experience the traumatic event as if you’re reliving it. I don’t have these often, although I’d readily trade an emotional flashback for a visual one. At least, with visual flashbacks, I can give words to what I’m re-experiencing and thereby desentisize myself.

Somatic flashbacks, I’m not sure I have. After all, most trauma I endured didn’t leave physical damage. I mean, I do have “weird” physical symptoms, but I’m assuming these are just from mental stress and aren’t direct relivings of a traumatic experience.

Like I said, most of my trauma was emotional or psychological. I usually think this doesn’t “count”, as most people when describing trauma, describe sexual or physical abuse. I didn’t endure much of this and, as far as I know, it didn’t leave me with major post-traumatic symptoms.

I did, however, describe the few incidents of physical and sexual trauma when I was asked about trauma by the psychologist who diagnosed me with PTSD. This is just easier to grasp. When I say a person hit me or threatened to rape me, it’s understandable it was abuse. Then agian, these incidents were few and far apart. For instance, the person threatening to rape me was practically a stranger and it was a single incident that had no connection to the ongoing trauma I endured.

This ongoing trauma left psychological wounds and I endure almost-daily emotional flashbacks of it. That being said, both the flashbacks and the traumatic experience itself are influenced by my interpretation. As such, it might be it wasn’t “real” trauma, but in my BPD mind, I interpret it as such.</P.

Psychiatric Diagnoses I’ve Been Given

I just checked out the “30 days of mental illness awareness” challenge and was inspired to write a timeline of my mental health. Then I realized I already wrote it in 2015. Another question in the 30-day challenge though is what you’re currently diagnosed with. Seriously, I don’t know what exactly my current diagnosis is. I know what the university hospital psychologist diagnosed me with, but I am not sure the psychiatrist at my current community treatment team agrees.

I’ve had a lot of diagnoses in the past. I’ve had even more suggested diagnoses that never made it into my file. Today, I will write a list of the diagnoses I’ve had. I will comment on them too.

1. Autism spectrum disorder. I was first diagnosed with this twice in 2007, then again in 2010. I lost my diagnosis in 2016 and was rediagnosed in 2017. This is the only diagnosis I’m pretty sure of that I agree with 100%. It’s the only diagnosis that I’ve been given through a proper evaluation (several, in fact).

2. Adjustment disorder. This was my diagnosis upon admission to the mental hospital in 2007. I didn’t meet the criteria for depression or any other serious mental health condition but needed care anyway. I was at the time fine with that diagnosis and think the crisis team psychiatrist who made it, did a pretty good job of assessing me.

3. Impulse control disorder NOS. I was never told why I got this diagnosis. I just found it on my treatment plan in May 2008. Probably, it was a replacement for the adjustment disorder, which you can only have for six months once the stressor that caused it goes away. I never agreed with this diagnosis and didn’t really take it all that seriously.

4. Dissociative identity disorder. This was diagnosed in November of 2010 and was probably the most controversial diagnosis I’ve ever had. I wasn’t properly assessed for it and my psychologist at the time took what I told her almost at face value. I never believed deep down that I met the full criteria for this. I mean, yes I do have alters and I do have pretty bad dissociative symptoms sometimes, but amnesia is the exception. I find this terribly hard to admit but I do have to acknowledge this diagnosis was in part based on (self-)suggestion. I do believe, like I said, that I have some dissociative symptoms.

5. Post-traumatic stress disorder. I got this diagnosis together with the DID. I don’t really know why. I mean, yes, I did (and still do) have some symptoms, but I’m not sure I have nough and I never reported more than I actually had. I did get some assessment for this. I do currently believe I definitely do have some PTSD symptoms, particularly complex PTSD symptoms. Then again, there is a lot of overlap with borderline personality disorder traits.

6. Borderline personality disorder. This was diagnosed in 2013 and replaced DID and PTSD. It was later “downgraded” to BPD traits. I do agree I have BPD traits, but I am more the quiet borderline type.

7. Dependent personality disorder. I was given this diagnosis in 2016. Never quite agreed with it, except in the sense that I could be led to believe I had every disorder that was ever suggested to me.

8. Depression. This was diagnosed in 2017 by the university hospital psychologist. I had previously been diagnosed with depressive disorder NOS, but that, according to my psychologist, was only because a diagnosis on axis I (anything other than a personality disorder) is required for treatment. I admit I was pretty badly depressed in the months that I had my assessment at the university hospital, but am not sure it was bad enough for a diagnosis. I mean, I didn’t meet the criteria in 2007, so how could I meet them in 2017? I’m assuming my current psychiatrist removed that diagnosis.

Just One Thing

Last week, I started a journal-style blog to explore my inner world. As usual, I didn’t write in it much at all, so I’m resorting back to this blog. The reason I wanted another blog is because of the derogatory comments I’ve gotten here regarding my dissociation. No, I don’t have a diagnosis of dissociative identity disorder anymore and no, I don’t claim to be DID. I do however have insiders, parts, alters or however you’d like to call them. I don’t care what people think of this, or at least, I try not to care. To reclaim myself and my experience, here I’m sharing a post I wrote last week.

Manyofus1980 from Therapy Bits posed an interesting question: if the world could understand just one thing about your mental health diagnosis, what would it be? In the post title, the question is about your “mental illness” rather than your “diagosis”. This is important to my answer, as my short answer is: my diagnosis does not dictate my experience.

I have had countless diagnoses over the years, some of which I agreed with and some of which I disputed. I don’t even know what my current diagnosis is according to my community treatment team. According to the university hospital where I got a second opinion last spring, it’s autism spectrum disorder, recurrent moderate depression and borderline personality disorder traits. Of this, I doubt the depression, because my default mood is low. Then again, I do seem to remember feeling much lower than low in the months that I had my assessment at this hospital. The thing is, I can’t usually connect my feelings from the past to the present if they’re very different.

We didn’t really go into my trauma experience, as my assessment was primarily focused on autism. However, the university hospital psychologist did recommend I get EMDR treatment for the negative experiences I had in the process of moving towards independence. I have not had a trauma-based diagnosis since 2013 and that’s fine by me. I don’t need a diagnosis to justify my experience.

I am who I am. We are who we are. We don’t fit in a diagnostic box, because, well, we’re we.

Sometimes, we feel upset that we don’t get recognition from our treatment team (as far as we know) for our traumatic and post-traumatic experiences. I had a lot of difficulty answering my psychiatrist’s questions about this during my intake interview. I mean, most of the trauma we endured, didn’t leave visible wounds. I know that dissociation can be caused by attachment issues, sometimes even too mild to create PTSD. However, there is still a common belief that only prolonged sexual or ritual abuse can create alter parts. I try not to care. We are we are we, so deal with it.

A Place to Belong

When I saw this week’s Five-Minute Friday prompt on Saturday, I just had to participate. It is hard, because I usually take much longer to write my blog posts, so I kept delaying this post. Here is it. It’s a short one. The prompt is “Place”.

I have always longed for a place to belong. I don’t think I ever felt quite “at home” anywhere. I’m still getting used to that feeling now that I’m in fact home.

I mean, when I was first admitted to the mental hospital in 2007, I longed for a supported housing place to call my home, yet none could be found that suited me. My last psychologist at the institution said this was because I just wanted to remain institutionalized forever. There may be some truth to this, in that I fear independence and in some ways long to be taken care of.

However, another facotr is I feel out of place everywhere. The grass is always greener on the other side of the fence, so to speak.

I am trying to make myself at home now in our house, but I’m constantly worrying that this too will not last. Like, we might be moving to our own home someday withint he foreseeable future. I always said we’d buy the home we now live in from the housing corporation and
I’d still be living here in fifty years. I guess not. This is hard. I hate change and yet, I cannot settle anywhere.

“Just Blind”: My Experience With Passing and the Resulting Burn-Out

Last May, I wrote my first post in the 30 Days of Autism Acceptance. I never followed through with the rest of the challenge, but today, I’m inspired to write on the day 2 topic, which is passing and autistic burn-out.

There is a lot of societal pressure to look and act as “normal” as possible. Passing is the situation where people who don’t belong to the “normal” majority appear as though they do. This may refer to disabled people appearing non-disabled, but it also refers to people of racial minorities being perceived as white or to queer people being perceived as straight.

I never fully passed for non-disabled, because I’m blind, but I did try to pass for a long time. People however often could tell that I had some kind of disability even if they couldn’t tell what it was. Interestingly, besides not passing for sighted, I don’t believe I could ever fully pass for neurotypical, except to those who believe an autistic appearance is normal for blind people.

In addition to appearing normal, disabled people are also pushed to achieve those things that are deemed “normal” in society. That is, except when you look so obviously disiabled that people judge you to be too “low-functioning” for that, in which case they usually greatly underestimate your abilities. I may write about that at some other point. There is a lot of pressure even from within the disabled community to perform as well as non-disabled people do. I see this particularly in the blind community, except, once again, when a person is seen as severely disabled enough not to need to achieve.

Until I was twenty, I was almost universally perceived as “just blind”. Oh and presumably extremely intelligent. As such, I had to perform according to my intelliigence, so I had to go to a mainstream, high-level secondary school. All my problems there were chalked up to either my blindness or my high intelligence.

At age twenty, I resided in an independent living training home for the disabled, which had originally been set up specifically for the blind, so most staff had some expertise on blindness. It was there that it first became apparent that I’m not “just blind”. I was referred for a diagnosis and diagnosed with an autism spectrum disorder in March of 2007. Eight months later, while living independently, I completely fell apart. I experienced autistic burn-out. Yet many people still see my diagnosis, my burn-out and my subsequent voluntary admission to a psychiatric hospital, as an elaborate way for me to manipulate people into giving me care.

I never fully recovered from my burn-out, in the sense that I went back to living a “normal” life for a person who is “just blind”. I was in college in 2007. Now, even though I’m out of the institution, I have no plans of going back to full-time education or finding a paid job. Though I may want to attend some part-time education or do volunteer work in the future, I’m now happy to be at a day center doing sensory activities. I am also glad that I was finally approved for home support yesterday.

In this sense, I did in fact recover from my burn-out. I mean, I did not return to the life that essentially caused me to burn out, but I do think my life is meaningful. In fact, I am happier now than I was when I still passed for “just blind”.

Ten Things You May Not Know About My Disability Experience #SEND30DayChallenge

Today I discovered the #SEND30DayChallenge, a 30-day special needs and disabilities blogging challenge. I have participated in way too many 30-day challenges and there’s not one I’ve finished. However, they’re usually just meant to inspire people to write about certain topics. Most people I know don’t follow these challenges over 30 consecutive days.

The first topic in the #SEND30DayChallenge is “the meaning beheind your blog name”. I have a pretty self-explanatory blog name, so I’m not writing about this. Instead, I’m going with the day 2 topic, which is “10 things you don’t know about ___”. Here are ten things you may not know about my disability expierence.

1. I am multiply-disabled. One common myth about multiple disabilities is that the term should refer only to those with an intellectual disability combined with a mobility impairment. I do have a slight mobility impairment, but I don’t have an intellectual disability. However, I am multiply-disabled nonetheless. I am, after all, blind and autistic and mentally ill and have some other difficulties.

2. I struggle with seemingly easy things while I find seemingly diffcult things easy. For example, I can work a computer but not put peeanut butter n a slice of bread. Similarly, due to the variability in my energy level, executive functioning and mental health, I can do some things one day but not the next.

3. You cannot always tell why I have a certain difficulty. Neither can I. This is hard, because people often want to categorize and label things that are out of the ordinary.

4. I have difficulty with communication sometimes. I don’t just mean non-verbal communication, which would seem logical because I’m blind. I mean speech too. I am usually verbal, but lose my ability to speak coherently (or sometimes at all) under stress.

5. I have serious sensory issues. For instance, I find certain sounds incredibly overwhelming. I also seem to have sensory discrimination issues, like with understanding speech in a crowded environment. The worst bit about my sensory issues is that I don’t always notice which is bothering me. For example, I may be hungry but not notice it because there’s a radio in the background that catches my attention.

6. I have slight motor skills deficits. Whether these are diagnosable as anything, I do not know. People on social media often urge me to seek a diagnosis, as my parents either weren’t given a diagnosis or don’t care. However, I find this incredibly stressful and difficult.

Just today, I considered buying myself a white walking stick. They’re sold at assistive equipment stores for the blind. I after all usually use my white cane more as a walking stick and the white walking stick would still signal people to my blindness. However, as much as I seem comfortable invading Internet spaces for mobility-impaired people, I don’t feel so comfortable getting assistive devices for this reason.

7. I am blind, but I still can see a tiny bit. I have light perception only according to eye tests. This’d ordinarily mean I’m functionally totally blind and I usualy say I am. However, I can see such things as where windows or open doors are located. This sometimes confuses people, but in reality, most people who say they’re blind have a tiny bit of vision.

8. I exhibit challenging behavior. This is not willful misbehavior. Rather, it is a response to overload or frustration. I am learning better coping skills.

9. I am more than my disabilities. I have summed up most of my recognized challenges in the above points, but like every human being, I have my strengths and weaknesses.

10. I don’t have special needs. I just have needs. I mean no offense to the special needs parenting community, as I know they don’t mean to offend me. My point however is that, if we see the needs of disabled people as somehow more “special” than those ordinary needs that non-disabled people have, we may forget that not all our needs are explainable by disabilities and we don’t need to have a recognized disablity to justify our needs. We’re all human, after all.

You Baby Me Mummy
Spectrum Sunday