Tag Archives: Sensory Processing

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

Describing My Limitations

Many years ago, an online friend of mine was part of a disabled people’s ministry that explored what it meant to be disabled. She wanted to get me involved too, but at that point, the ministry was closing down, so she started her own discussion group. The first question we got was to introduce ourselves without mentioning our disabilities. I don’t know whether I did this with my last post, but I don’t want to do things over again. The second question was to describe your limitations. We could mention diagnoses, but the focus was on how disability limited us. I am now trying to answer this question in this post.

My first disability is blindness from retinopathy of prematurity. My vision is measured as light perception only. Technically, this means i can see the eye doctor’s flashlight when it’s brought into my visual field but I cannot tell what direction it comes from. This commonly leads to the misconception that people whose vision is measured as light perception only, are essentially completely blind. In truth, I can orient to light – just not the eye doctor’s flashlight. I can visually locate windows and see whether a light is on or off. With that last one, I do often need to check twice to be sure and I often find it easier to memorize the position of the switch than to depend on my vision.

Then it gets hard. I used to have a diagnosis of autism, but since that was removed, I now have to describe my limitations without depending on a catch-all label. Let me try. I have sensory processing difficulties. I am oversensitive to sounds and textures. With regards to taste, I am a sensory seeker, in that I crave spicy food. I can also be a seeker in the vestibular sense. I used to love to swing and when the movement therapist at my old institution had a trampoline set up, I was over the moon.

I may also have auditory processing issues. I have trouble understanding speech sometimes, especially in a crowded place. I haven’t had a hearing test in forever, so can’t be sure that it’s processing and not my hearing itself. Sometimes though, I do hear something, ask the other person to repeat it and then before they repeat themselves, I process what was said.

I also have social difficulties. I can keep a reasonably normal-sounding conversation but it takes me a lot of energy. I have trouble with reciprocity, in that soetimes all I do is listen and sometimes all I do is talk. I can’t do group conversations, because I get overwhelmed.

I have mild communication issues too. Sometimes, when anxious or overwhelmed, I go mute or stutter or have trouble finding the right words. I remember going mute in high school too, but not sure whether I had these issues before that. It could be anxiety, since I also have that. My psychologist is considering diagnosing me with generalized anxiety disorder, which basically means you worry to an extreme degree about all sorts of things. There are also additional symptoms, like difficulty concentrating, physical tension, etc.

I have cognitive issues too. This may sound stupid, because I have a high IQ. Maybe executive dysfunction is a better word. I appear lazy sometimes, because I get easily overwhelmed by relatively complex tasks and then end up not doing them at all. I also feel anxiety when people ask me to do things, but when I take the initiative, I feel more confident. I wrote earlier that this could be pathological demand avoidance. However, when for instance my husband asks me to do something, i’m fine with it unless it’s a complex task.

Then I have emotion regulation difficulties. I used to have a diagnosis of borderline personalty disorder, but that can’t co-exist with the brain injury I suffered from a brain bleed and hydrocephalus. I don’t have the relational instability that many people with BPD have. Mostly, my emotions are extreme. In this sense, I relate more to the profile for multiple complex developmental disorder (McDD) than to that for BPD. I have never been psychotic, but I do have some delusion-like thoughts.

Lastly, I have motor difficulties. I saw a physiatrist till I was about eight, but was too young to remember the diagnosis. I have a much weaker left side than right, although I recently found out that my grip strength is equal in both hands. The fact that I use my left hand much less could indicate mild hemineglect (lessened attention to one side of the body, usually left). I also have and have always had a lot weaker muscles than most people. I have however learned to live with that. I mean, what do you need to reach your toes for when in sitting position? I do have significant balance and coordination issues. MY gait is very wobbly. I recently learned that healthy people can climb stairs without even holding onto the railing. In my home, where the staircase has only one railing, I need to hold onto the railing with both hands and wobble sideways.

These are the limitations I can think of now. I have some others, but this post has been long enough. When I feel like it, I will answer the next question I remember, which was about adaptations for coping with your limitations.

#DearSoandSo: Psychological Evaluations

Dear evaluating psychologist,

You don’t know me yet. Soon, you’ll know me as the blind, autistic person who was born prematurely. Then, you’ll hopefully get to now me as Astrid. I was referred to you by the autism center’s consultation team for neuropsychological and intelligence testing.

You need to know that I am a survivor of psychological trauma. I won’t disclose any details, but it’s important that you know that psychological evaluations are a big trigger for me. They are very intimidating. As a result, I might dissociate and put on a mask, which might influence my performance.

I ddon’t know how exactly to prevent myself from dissociating or putting on a mask. I also don’t know for sure what you can do to help me. However, I would suggest you refrain from making assumptions about my performance prior to or during testing. I will try to remember that I’m still me with my abilities and difficulties, regardless of the outcome of testing. However, this is hard to remember.

I hope that the testing experience will be as stress-free as possibe. Thank you for any help you may be able to provide.

Kind regards,

Astrid

I went to the country’s top notch autism center, which happens to be in my town, yesterday. They thankfully believe I’m on the spectrum and don’t see a need to re-evaluate me. They however recommended intelligence and neuropsychologcal testing to find out why I function at a much lower level than my verbal ability would suggest.

They also recommended a sensory processing evaluation. I have suspected I have sensory processing issues for a long while, but now that I think on it, I may ask specifically about auditory processing. I used to be seen as an auditory learner (probably because my tactile skills were worse), but I still have a lot of difficulty understanding speech when there’s background noise. I also tend to process speech with some delay it seems. For example, I’ll say “What?” and then realize I did hear what was being said. Some people in the sensory processing disorder community said that auditory procesisng is different from sensory integration, so I’ll have to ask specifically about this.

Lastly, they recommended a support worker come to visit me at home and in the institution to establish my independence and support needs. Then, they could help me develop greater independence skills.

Dear So and So at Mummy from the Heart

Sensory Processing Difficulties in Autism #AtoZChallenge

Welcome to another day in the A to Z Challenge, in which I write about autims. Today, I write about an important aspect of difficulty in autistic people: sensory processing. Sensory processing disorder (SPD) is sometimes also diagnosed in non-autistic children. Therefore, this piece may be useful for both people interested in autism and those dealing with SPD kids.

Sensory processing refers to the way the nervous system receives and interprets messages from the senses and turns them into appropirate motor or behavioral reactions. There are many different ways in which sensory processing difficulties can manifest themselves in people with SPD or autistic people.

The most common type of sensory processing disorder is sensory modulation disorder, which means an affected person over-responds or under-responds to sensory stimuli or seeks sensory stimulation. In autistic people, the stereotypcal (self-stimulatory) movements that are a core symptom of autism, are usually interpreted as a sensory modulaton issue. In fact, unusual sensory responses are a core symptom of autism in DSM-5. Some people are mostly sensory seekers, sensory over- or under-responders, while others exhibit mixed features.

In addition to sensory modulation disorders, sensory-based motor disorders (eg. dyspraxia) and sensory discrimination disorders are other subtypes of SPD. The symptoms of these disorders are not autism core symptoms but they are common in autistic people too.

I myself have many different symptoms of sensory processing difficulties. For example, I avoid certain textures. I wouldn’t wear jeans until age twelve, still hate the feel of brushing my teeth and dislike getting my hands dirty sometimes. These are symptoms of sensory over-responsiveness. So are being a picky eater and sleep problems, both of which are common among autistic people.

Symptoms of sensory under-responsiveness include appearing unreactive and slow, having extreme difficulty waking up, lacking awareness of pain and difficulty with toilet-learning (because of not feeling the urge to go). I myself do not have most of these symptoms.

Sensory seekers might appear impulsive. They often fidget excessively, climb or jump when it’s not appropriate, bite or suck on clothes, pencils, etc. I did/do many of these things.

I also have many symptoms of sensory-based motor disorder (dyspraxia), such as being uncoordinated and clumsy. Lastly, people with sensory discrimination disorder often have difficulty with tasks such as dressing and eating, have poor handwriting and will drop objects constantly.

How to tell if your child with sensory processing difficulties has SPD or autism? Since many of the sensory processing difficulties listed above are common in autistic people too, this may be hard. Sometimes, getting an autism diagnosis might be beneficial for the sake of treatment, because many health care systems do not fund therapy for sensory processign disorder. There are, however, difficulties in autistic people that those with “pure” SPD do not have. For example, autistic people often have difficulties with theory of mind (the ability to understand and respond to others’ motives and feelings) and executive functioning (organizational skills). If, in addition to sensory processign problems, your child particularly has social communicative problems, it may be advisable to have them evaluated for autism.

Executive Functioning Disorder (EFD)

Lately, I’ve mentioned executive functioning problems a lot. Though executive functioning disorder (EFD) is not formally recognized, it is pretty common in individuals with ADHD, learning disabilities and autism spectrum disorders, particularly Asperger’s Syndrome. So what is executive functioning disorder?

First, let me explain what executive functioning is. Executive functioning is a set of mental processes that enable people to connect past experience to present actions. These processes include planning, organization, motivation, maintaining attention, anticipation of alternative consequences, and generalization of what has been learned. People with EFD have impairments in many of these areas. Thogh executive functioning is often related to attention, not all people with EFD also have attention deficit disorder.

Here are a number of characteristics of executive functioning disorder:


  1. Difficulty ad/or apparent lack of interest in setting goals.

  2. Difficulty initiating a task or generating ideas independently.

  3. Difficulty comprehending how much time a task will take.

  4. Troulbe telling a story (in spoken or written language) because of difficulty organizing details.

  5. Inability to stop and think of a strategy to solve a problem.

  6. Continuing to use the same strategy to solve a problem, even when it’s ineffective.

  7. Difficulty following instructions that consist of multiple steps.

  8. Swinging from impulsivity to rigidity.

  9. Difficulty handling change.

  10. Inability to reflect on past experience to plan for the future.

  11. Past consequences don’t effect future behavior.

  12. Little awarness of or interest in learning about personal limitations or weaknesses.

  13. Mood swings and emotional instability. May react to emotions rather than verbalizing feelings.

  14. Seeing personal problems as externally caused; inability to see one’s own contribution to a problem.

  15. Difficulty taking another person’s perspective.

  16. Risk-taking or thrill-seeking.

There are a number of situations in which a person’s executive functioning disorder may interfere with their academic, social and daily living skills. In the area of time management, I have a lot of difficulty thinking of what to do during the day. This is not because I have few obligations – oh well, that is part of the problem too -, but even when I have a lot to do, I can’t seem to organize or plan for it. I procrastinate, too, as do most people even without EFD, but in my case, it’s sometimes due to inability to organize an activity. Initiating an activity may also be a particularly hard skill for people with EFD. This is sometiems called inertia.

In the area of problem-solving, I have a hard time following instructions that aren’t spelled out. I don’t have troubl memorizing multiple steps, but they do need to be clearly stated. For example, last week, I was planning on going for a walk. I had my shoes off and the nurse told me to put on my shoes. I did, but I didn’t put on my coat. I am not particularly literal-minded, so that wasn’t really the problem. Now that I think of it, I realize that maybe besides sensory processing difficulties, EFD might contribute to why I have a hard time deciding on which clothes are appropritate for the weather. In school, I had specific rules on what to wear during specific tempetrautres. I have been in situatiosn where it was over 30_C and I was still wearing a sweater because I hadn’t watched the weather forecast.

Emotion regulation problems may or may not be due to EFD in my case, since borderline personality disorder causes these problems too, and I exhibit some stereotypical BPD reactions. Then again, low frustration tolerance, which is not per se a BPD characteristic, is definitely related to executive functioning, and this has always been said to be a core problem of mine.

What Does Mild Autism Mean?

Yesterday, I had a discussion with a nurse, who said that I am very mildly autistic, if I’m autistic at all (which she can’t comment on of course). This got me thinking, because I know that in some respects, I’m not stereotypically autistic, but then again, that’s not the same as not being significatly affected by autism, is it? I am for this reason posting an updated version of a post I wrote several years ago about what mild autism is. I wrote a list of common assumptions similar to the one on high-functioning vs. low-functioning autism, and am going to add some more.

  • Mild autism means Asperger’s Syndrome. This is a common assumption among auitsm advocates trying to discredit people with an Asperger’s diagnosis. Indeed, it is true that people with Asperger’s diagnoses in DSM-IV-TR must not have significant impairments in cognitive or language abilities, but having an IQ above 70 and being able to speak, says little about real-life functioning.I know that adaptive functioning cannot have been impaired in early development either. In this case, I was misdiagnosed with Asperger’s, but then again maybe my adaptive functioning impairments were presumed to be due to blindness. The DSM-IV-TR expanded text uses other differentiation criteria, like “active but odd” vs. “passive” social behavior. Again, I am passive, as are most women on the autism spectrum.
  • Mild autism means the person has an IQ above 70 (or 85, in some cases). This doesn’t say anything about one’s autism, but about the presence or absence of comorbid intellectual disability. Why would the severity of one disorder be defined solely by the existence of another disorder?
  • Mild autism means the person meets fewer criteria. Relatively speaking, then, again, Asperger’s can be considered to be milder than autistic disorder, because for an Asperger’s diagnosis, you need to meet only three criteria (out of eight), whereas you need six (out of twelve) for an autism diagnosis. I could be considered to have moderate Asperger’s, because I meet five criteria (as I walk myself through the DSM-IV-TR right now, I forgot how many I met during my diagnostic interview). However, most people with an Asperger’s diagnosis will in fact meet some criteria from the “communication” set that isn’t included with their diagnosis, but less obviously than those with an autistic disorder label (I for one have periods when I use a lot of repetitive language, but am generally judged to have normal communication). Also, some people experience more trouble due to one area of impairment (eg. repetitive behaviors) than another, and may therefore meet fewer criteria but still be equally severely impaired. And, of course, I’m not even speaking about those autism symptoms that haven’t made it into the DSM-IV, like sensory processing differences, executive dysfunction, etc. I for one find these particularly impairing.
  • Mild autism means few behavioral problems, like aggression or self-injury. Even though this is often assumed to be a logical determiner of severity, these problems aren’t anywhere in the DSM-IV-TR or DSM-5 as far as I know. I got this one thrown at my by my therapist and social worker. They don’t realize that I’m heavily medicated and that, besides, my aggression/self-injurious behavior is considered a symptom of my borderline personality disorder.
  • Mild autism means the person can live independently, keep a job, etc. This may in fact be the most accurate determiner of functioning, and it has made it into the DSM-IV-TR as one’s axis V GAF (global assessment of functioning) score. The problem with this very raw guess about one’s ability to function in daily life, is that of course someone may function alright in one area and not function at all in another. For example, I am at this point unemployable for reasons related to my autism (of course I am unemployable for reasons related to my lack of education, too, but that is not the point) and cannot live independently, but I can be in a romantic relationship.
  • Mild autism smeans needing little structure: this has made it into DSM-5 as the repetitive behavior severity determiner. I got this thrown at me yesterday by the nurse saying I didn’t need ltos of structure. This may be so, in that I do not attend day activities nine-to-five, but this is mostly because I have such severe sensory and cognitive overload issues that I cannot function in a group for any extended period of time. I also avoid needing support a lot by for example staying in bed all day.

  • Mild auism means being able to hold a conversation. This is in DSM-5 as the social communicative impairments determiner of severity. I can hold an okay one-on-one conversation, but then again, I’m passive, not active-but-odd.

I do realize that I’m not severely autistic by many of these determinants. This, a gain, however, does not mean needing little support. In fact, on a busy ward like mine, it is required that you actively ask for support when yo need it. That is particularly hard for me, so I’m told I a pretty self-reliant. This inability to ask for support has led to a few pretty awkward situations lately. For example, yesterday night, I couldn’t sleep, but when going to the night staff, I was met with: “So what can I do for yu?” Well, I didn’t know, so I went back to my room and was up all night. When, a few hours later, I was feeling very much on edge, I self-harmed to calm myself because I knew that I didn’t know what else to do and I knew the staff wasn’t going to help me anyway. I haven’t told the staff about my self-harm, because I reckon they’ll chalk it up to BPD-related attention-seeking if I do.

“Autistic Traits”

A few days ago, Jessi over at Deciphering Morgan wrote a post on autistic traits vs. autism. I came across it through a response by Stacey of We Are the Brothers B. Stacey”s son Thomas has “autistic traits”.

What annoys me about the “autistic traits” thingy, is that it often connotes that 1. everyone who is a little socially awkward, has them, and 2. having autistic traits means you’re not as severely disabled as someone with full-blown ASD.

To start off with the first, I am aware that there is something called the broader autism phenotype, which includes people who are socially awkward and a little routine-oriented, but not enough to meet the criteria for an autism spectrum disorder. The important thing is that people on the broader autism phenotype usually do not have disabling symptoms. In both DSM-IV and DSM-5, it is a requirement for an autism diagnosis that your daily functioning is impaired to some degree. In my opinion, just being somewhat of a loner with a couple of friends, is not an impairment. Saying you have “autistic traits” when you’re truly just an introvert, trivializes the impairmetns of those with actual autism or significant autistic traits.

Then on to the second idea, which is pretty much the polar opposite of the first: people who just have “autistic traits”, are not severely disabled. Please realize that you cannot be diagnosed with autisms pectrum disorder in DSM-5 unless you meet all three social/communicative impairment symptoms. Autism is still seen as a social cognitive disorder, and I’m not sure that I think of this, but people who are pretty sociable, cannot be diagnosed with autis under DSM-5. Social development, however, is just one area impaired by autism. I for one am relatively sociable, but I still have severe difficulties in sensory processing and executive functioning, leading to quite severe impairments in self-help skills, significant behavior problems, etc.

Both my former nd current therapist trivialized my autistic impairments by referring to me as having “autistic traits”. I do have a formal diagnosis of an autism spectrum disorder, but havin this diagnosis constantlydownplayed, confuses and irritates me. Sensory processing disorder is not as much of a recognized disorder here as it is in other countries, but even if it were, the connotation is still that SPD is less severe than ASD. Executive functioning disorder is not recognized by most clinicians at all. This leaves a lot of children and adults with severe sensory processing or executive functioning difficulties either getting the wrong diagnosis, or getting less suppor than they need. I am not sure whether I believe adding more labels to the diagnostic manuals, is the solution to this. However, I do believe that children and adults who are having a lot of difficulty functioning in life, should get the support they need.