Questioning the Current Autism Spectrum Model – Guest Blog

This is not the first time I’m featuring ‘s work her on my blog. If you missed her last guest post My Meltdown (a Poem) please check it out. My dear friends has some amazing insight and describes in detail her feeling during a meltdown.

 

In this latest, thought provoking, feature  discusses the Autism Spectrum Model. Please check out the original post here. I strongly encourage you to subscribe and follow  for more great content and thought provoking works.

 

(The feature image is MY Aspie quiz result not ‘s)

Color wheel. Concept: Autism Spectrum

Can an autistic person be both high and low functioning?
Is this even the right question to ask?
I’ve heard the term “high-functioning” and “low-functioning” used for autism for nearly two decades, when I was first diagnosed.
I am not offended by the terms, but confused by them.
What is in question? IQ? EQ? verbal and social skills? How about coping with co-morbids and sensory processing disorder?
The autism spectrum is often seen as linear, with low on one end and high on the other.
This is one dimensional and I think, misleading.
I read Rebecca Burgess’ insightful article on The Mighty , illustrating the autism spectrum as a color wheel using a sweet and insightful character named Artie. I highly recommend clicking on the link and reading the link as it will better help you understand what I am about to say.
My IQ has been tested in adulthood twice. Each time, I scored 110, considered a B+ grade. Intellectually, I could say I’m high-functioning.
I can speak, though I sometimes have to stop and think about what I have to say or wind up repeating words while I try and think about what ones I want to use. I do well with writing/typing. It is premeditated. No one is waiting on my response. I can communicate on a deeper, philosophical and emotional level. I could say that I am high functioning verbally and moderately functioning with communication.
When it comes to sensory processing disorder, I don’t know. I don’t have many issues with sight, smell, or taste. I have a little trouble with spatial ability, especially in tight spaces or 90 degree angles. That means I bump into a lot of stuff.
Most of what I call “severe” comes from my auditory processing. I am hearing sounds louder than most.
In early grade school, the people that gave the hearing tests to kids remarked at how I could hear both high and low pitch sounds at very low volume. I screamed when the scratchy records were played. I have hated classical music all of my life due to the sudden changes in pitch and volume. I cannot be around small kids crying. I often played on the edges of the playground as a girl. I couldn’t handle the doorbell until I was in my tween years. Dogs barking, neighborhood fireworks, car horns all caused extreme startle (moro reflex) and automatic meltdowns.
My auditory processing worsened in my teens along with my body’s ability to regulate hot and cold. The only sound that became manageable was the doorbell.
Sensory speaking, the auditory part excludes me from so much of what life entails: socialization, employment, community service, that I would not be exaggerating to call myself severe.
I do not drive a car due to the fact my mind cannot process too much stimuli at one time.
I have always been a slow learner. Repetition was and is the only key to retaining information. Yet, I wouldn’t qualify as “intellectually disabled”, because I do eventually get the concept-unless it’s math! 😉
I think the answer isn’t the labels. It is a problem in how we perceive the one-dimensional model. It is outdated
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25 thoughts on “Questioning the Current Autism Spectrum Model – Guest Blog”

  1. Thanks for a really interesting post. I know what you mean about high and low functioning. For me it changes with circumstances. However I think the DSM 5 did a good job with their three levels of support… Level 3 – ‘Requiring very substantial support’, Level 2 ‘Requiring substantial support’ and Level 1 ‘Requiring support’. My feeling with these is that they are really an approximate indicator of what kind of support a person might need. They only describe things very broadly and allow agencies and professionals trying to help an individual to quickly zero in on a more appropriate form of support and communication. I think the high functioning and low functioning labels are the same. Neither set of labels is very accurate to those of us with autism but for those who work with us, our doctors, our schools, our employers, other services, it’s a really helpful I doctors of how to begin, especially when they don’t know us as individuals. Just my thoughts. Thanks again for a great post!

    Liked by 2 people

      1. I know what you mean. I think I’ve been really lucky pverall. I’ve been given what I need most times when I’ve asked. The problems I have more are things like this week I was turned down for a beginner’s art class because the tutor thought the class would be unsuitable for my needs. He takes beginner’s but not me. He didn’t say it was the autism but I can’t think why else I would not be good enough for a beginner’s class.

        Liked by 1 person

  2. My daughter, who is 23 now, was first diagnosed with ADHD at age 2. She was very hyper, threw fits of rage a lot, would pull her hair or bite others, and didn’t communicate well. Later, when she was 10 and she had been held back in school in 1st grade for not being able to read or knowing the alphabet, a friend told me she acted like her son with Aspergers. Her IQ was normal, but she was behind two years socially. She was a forceps child, the only one of my children who had forceps used at birth. My other 3 children have higher than normal IQ’s and developed socially and intellectually on time (whatever that means). Me daughter saw Autism Specialists and had an MRI of the brain. Her brain was normal and I was told it was just wired different. She received speech and behavior therapy and I home schooled her when the schools refused to give her the educational modifications (one of one teaching) that 3-4 specialists recommended. She excelled with that help. I gave her no answers and helped her learn new ways to think for herself. She ended up just getting her GED and is now a wonderful mother of two little ones. She is very responsible, mature, and has a very strict way of how she runs her house. Evey thing must be perfect for her children. She has a great husband who helps her along when she needs it. I did notice that hormones during pregnancy caused her to had a melt down or two. She had this often during menstruation. Her triggers were florescent lights and large crowds of people. She was also over stimulated easily. She too had been labeled High-Functioning. To this day, she refuses to accept she has Autism and forbids anyone to mention the word. If you tell her different, she will shut down and not speak to you for days or years. Yes, she has not spoken to me for over a year when mad at me. She has 17 friends on Facebook because she is very picky of who she lets in her life. She has even written off some family members all together because she feels they do not support her. She can’t handle drama and will also stop talking to someone who has too many problems in their life. Since she is a mother, I have seen her be more accepting and less eager to push people away for having feeling or expressing how they feel. She used to get upset and go off when people did not like something she was doing or tried talking with her about emotional things. She’s now more calmer and able to discuss emotions (to a point) and can have more healthy disagreements with someone without blowing up at them. Anyway, that’s a little incite on my daughter who just turned 23 in Dec. I am not sure how old you are or if you have children. Pregnancy changed her a lot, I will have to say. Maybe it was hormonal? She seemed to get better when she started puberty. I was told by Drs that she would either get worse or a little better when puberty hit. I prayed for better of course. Thank you for this post.

    Liked by 2 people

  3. I related well to this article. I do not drive either and for the same reasons. I could also hear the faint sound when doing the hearing test at school. I was described as a clumsy child because I bumped into everything. I communicate better when I write and I have always craved quiet. I do however have an extraordinary sense of smell and some texture sensitivities.I do not think I am fixaited on any one particular subject and I dont know what it is I do that would be considered stimming…..unless it is sighing. I have this habit of breathing in deeply and exhaling loudly. I do not do this because of boredom or impatience and do not connect it or considerate it to be a sigh. Everyone else assumes I am sighing. Matter of fact most of the time I am not aware I am doing this. Would this be considered stimming. It helps me focus or keeps me fromk being overwhelmed. It is like I am releasing some kind of heaviness inside,like Im getting rid of extra pressure. Does that make scense?

    Liked by 2 people

  4. Yes, I agree with this. I am not always “High functioning” even though I was diagnosed with “High functioning Autism”. For instance, during sensory overload, or when socializing with others that I do not know super well, I am not as “high functioning”. I stim, to help me manage my anxiety inside of me, and I barely talk to anyone (also due to social anxiety). I also am not “high functioning” when I am having a meltdown. I think people need to look at this new model more so that Autistic people are not dismissed because they are seen as too “high functioning” or too “low functioning”.

    Liked by 2 people

    1. I am high functioning as well and when a melt down occurs I am anything but high functioning.I appear crazy. I am accused of over reacting,and told to calm down.I AM NOT ANXIOUS OR HAVING A PANIC ATTACK. I can not explain to others why I am freaking out,they just dont get it. And when I need to re-group they dont understand what that means either.Re-group means I need to turn off my senses and then turn them back on.I see it like a light switch,I am expected to just deal with sensory overload and make adjustments because the plan has changed. I am not able to do this and it causes me to freak out and you know what makes it worse?People keep talking to me,asking me whats wrong? Why am I acting like this?Whats the matter with me?For instance today I went to the elementary school to pick up my grandson. The plan changed right before I left,the traffic was bad,the school is big and there was a book fair going on,parents and students teachers all chattering, everybody in constant motion.I was overwhelmed with all the stimuli.I went to the store to get one item. It was over priced,had to go to different store,didnt have product, had to get different product. Anyway,by the time I get home I just want quiet…..I need to re-group. I couldnt because my friend was here and started asking me questions,the tv is on,and I can feel the melt down coming like a tornado and I my senses are being wrapped together like a cyclone,intertwined and all I see is a blur of colors and all I hear is loud loud noise and I cant stop the enevitable storm….and of course it destroys everything around me.

      Liked by 1 person

  5. The worse about DSM-5 is their unjustified dismissal of Asperger’s in favour of maintaining only an “umbrella” of Autistic Spectrum, when according to experts such as Simon B-C, the significant difference between classic autism and Asperger’s is the childhood language development, e.g. absence of language in the early stages of childhood in HFA, while its presence in Asperger’s. There are clear overlapping aspects to justify the necessity of an Autistic Spectrum, but the clearer categorising by the ICD-10 should have convinced the editors of DSM-5 to leave everything as it was in DSM-4-TR.
    The intellectual development differences are also significant between classic autism and Asperger’s, differences which if ignored, are causing the confusion present in individuals with Asperger’s, diagnosed with HFA just to fit the DSM-5’s jacket.
    Unfortunately, the European counterparts such as the UK, while heavily criticising the move by DSM-5, ended up by silently adopting its practice.
    The APA should finally get back from its pill prescribing chemical romance, to the vital neuro-bio-psychiatric research, otherwise more and more people will end up with their anxiety and depression symptoms aggravated by confusion.
    So until the ICD-10 is still in effect, prospective diagnosed should request at least the mention of Asperger’s Syndrome, if their diagnosis would justifies it.

    Liked by 1 person

  6. I agree “functioning labels” are arbitrary, and fluctuate. I especially find “functioning age labels” (someone, (other than the person self identifying) saying an adult “functions at” any age under 18) to describe behaviour. Just because we autistic people act different sometimes from neurotypicals, does not make us any less adult. #FunctioningLabels #FunctioningLabelsMean #FunctioningAgeLabels #FunctioningAgeLabelsMean #EndFunctioningLabels #EndFunctioningAgeLabels

    Liked by 1 person

  7. I like the idea of the spectrum in the sense that it helps people understand that individuals will have different ways that autism manifests itself in their life, and that no two autistic individuals will look exactly the same. But I don’t like terms such as low-functioning and high-functioning.

    I also think that autism is broader than the little box the “experts” have placed it in. The human mind and neurology are so complex, and diagnostic criteria are simply constructs created by people anyway. Am I making any sense?

    Don’t get me wrong, I think it’s helpful in terms of understanding ourselves and our neurology, I just get frustrated when it can be limiting. For example, I am female and was misdiagnosed and misdirected for many years by professionals.

    Liked by 1 person

    1. I think the problem is medical “professionals” wrote the book. Why do THEY get to describe us? Why are THEY the experts. I think Aspies should get to write the next description. Certainly we are more knowledgeable because we have first hand information.

      Liked by 1 person

  8. the colour wheel idea is an improvement on the 25 year old linear spectrum idea, but it does not go far enough. a far better view can be got from the idea of a colourspace. this is a 3D space that has a colour wheel in two dimensions, but also gradient from dark to light in the third dimension. this creates a sort of colour blob rather than a disc. on top of that, imagine that space is moving in time, and that each colour represents a personal characteristic… as time passes, the blob changes shape as certain characteristics become more or less prominent in a person’s experience.
    this approach is difficult to describe in words (and I’ve not tried very hard here – there’s a whole range of other factors in the model I’ve mentioned) but it does have one huge advantage, that it encompasses the full range of all capabilities for all humans, can contain a static measure of the ‘norm’, and as it changes over time for a specific individual, it can show how life can get tough even for someone designated from outside as ‘high functioning’, and can be glorious even for someone designated from outside as ‘low functioning’… and it also shows vividly how the most notable aspect of the autistic experience, no matter who you are, is a tendancy to display capabilities, sensitivities, emotions, cognition etc etc into the statistical extremes where almost no ‘normal’ peoples’ capabilities ever reach

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