I've been meaning to write a post about this for awhile and wanted to provide an update on how this transition is working out. A lot has happened since I wrote my original post a year ago. I'm still getting use to the area and I miss my friends in California dearly. This is when I realize that moving is a process that doesn't happen overnight. Whether you are autistic or not, it is a stressful process of rebuilding your identity in a new place as well as starting off from scratch in rebuilding your social networks. However my disability magnifies the challenges of adjusting to change as well as establishing social connections. So it is with this post that I will begin talking about all the things that have happened in the past year.
I've got a job as a paraeducator for the local school district. I was surprised that I got hired for a full time position right away since it is a small district and you have to start out as a substitute. I did bring a job coach with me for emotional support since job interviews can be stressful. However once I began the job, I realized that I did not need a job coach since I was doing really well. It has been an adjustment in learning to work with new kids as well as dealing with new co-workers. There are times that I feel exhausted after work. However, I feel that I am making a difference and I feel that I am a role model to the students.
In terms of disability resources, I found it to be very limited since it is a more rural area. For instance, I went through a lot of turnover in terms of support workers in being my companions in the past year. This was due to various reasons like illness, children, work/life balance etc. In recruiting potential candidates, I found that the pool of qualified people that I can draw from is a lot smaller compared to living in a big city like Los Angeles. It is only relatively recently, that I was able to find two people whom I felt were a good fit for the companion position.
Another difference between the disability communities in Los Angeles and Sequim is that there is a lack of understanding in regards to autism spectrum disorders. It seems that the supports and services cater to the needs of those intellectual disabilities. The one and only nonprofit that caters to those with developmental disabilities has classes and day programs but most of the participants don't have have intellectual disabilities or Down syndrome and are a lot older than myself. . A lot of the participants don't work and did not benefit from the interventions and opportunities that I received as a result of growing up in big city. I've also noticed that the principles of self determination and the power of choice and control are not widely discussed in this area compared to L.A.
In the year and a half since making the big move, I would have to say that I am slowly getting use to living in the countryside and enjoying the more slower pace of life. The past year has been full of major highs and lows and I felt very homesick. However, I've made trips back to L.A. to see my friends to help ease the transition. On a major positive note, I found out that I qualified for state services this past summer. I am very shocked but also relieved in knowing that I have a safety net of support services for the future. Would I consider living in Sequim forever?Probably not considering that there are not enough resources for people with autism or developmental disabilities in this area. However, I wanted to see how living in a small rural town would be for me.
Sunday, December 8, 2019
Wednesday, August 14, 2019
Independent living on the autism spectrum
One of the top concerns facing autistic adults and their families is the thought of leaving the nest and living in their own place. Independent living is a crucial marker of adulthood. However when you have autism or any disability, this task becomes very complex as there are a lot of variables that you have to consider. Things like housing, supports needed as well as what daily living skills that the person will need to learn. Living on one's own requires a lot of planning on the part of the individual and their family. As for my situation, I still live at home with my parents. However in the future, I want to live on my own someday but know that it's going to require a lot of planning and that living completely independently without supports would result in a less than desirable situation. It is with this post that I will talk about some the things to consider if you or your family member is considering moving into their own place.
The first step when planning to move into your own place is finding affordable housing. Like everywhere else across the country,the housing crisis makes it hard for people with developmental disabilities to reside in their own homes in the community.. Of course, there are Section 8 housing vouchers that can help those with autism and other disabilities find affordable housing. However, there is a waiting list and the availability of subsidized housing is far and few in between. Plus, not everyone will meet the financial requirement to qualify for such housing. Finding a place that is affordable and doesn't eat all of my paycheck should be a priority. I also want a place that is in a decent neighborhood with a relatively low crime rate. However since the price of housing and rent is soaring high all over the place, it is hard to find a house, town home or an apartment in a modest neighborhood. Given all these challenges, we need to focus on the housing issue if we want those with autism (as well as those with other disabilities) to be able to live and participate in the community.
Perhaps my biggest concern about the prospect of living on my own is arranging for supports to assist me with daily living. In anticipating this future transition, my executive functioning difficulties in managing everyday tasks like (cooking, budgeting etc.)and also dealing with change (I am still adjusting to living in Washington state) are some of the areas I will need assistance with. I will need someone to act as a coach and provide emotional support. The hardest part is figuring out supports/services as well as finding the right people for the job. The good news is there are many different ways to arranging for support or care needs. Perhaps a roommate can help out or support workers (either from an agency or individual providers) that can come in and assist with daily living skills, errands/appointment as well as social/recreational activities. Another creative idea, is having caregivers that double up as roommates. This type of arrangement involves a roommate who receives free rent or receives paycheck in exchange for providing needed supports and services. Of course deciding which support arrangement will work best depends if an individual qualifies for state services or if they have enough money to pay for support workers privately as well as the availability of natural supports.
A third variable is measuring adaptive skills or living skills a person possesses. This means taking an inventory of skills the person already knows, skills the person will need to learn as well as tasks the individual will need help with. This can be done either through a person center planning meeting or a formal adaptive living skills assessment. The amount of living skills the individual already possesses and has the ability to learn will vary. Of course parents can help their loved one prepare and help master some living skills. Measuring daily living skills can help figure out what assistance he/she will need once they move out.
I believe independent living is possible for those with autism and other developmental conditions. There is just some extra planning and research that will need to take place. It is something to consider long term since living with family is not a permanent solution since parents/caregivers will eventually grow old to care for their adult offspring. I am aware that some families have chosen group homes or intentional communities for their loved ones. However, this post is mainly addressed to those families or individuals who want to live in the community. Autistic people deserve to have the same opportunities as those adults without disabilities.
The first step when planning to move into your own place is finding affordable housing. Like everywhere else across the country,the housing crisis makes it hard for people with developmental disabilities to reside in their own homes in the community.. Of course, there are Section 8 housing vouchers that can help those with autism and other disabilities find affordable housing. However, there is a waiting list and the availability of subsidized housing is far and few in between. Plus, not everyone will meet the financial requirement to qualify for such housing. Finding a place that is affordable and doesn't eat all of my paycheck should be a priority. I also want a place that is in a decent neighborhood with a relatively low crime rate. However since the price of housing and rent is soaring high all over the place, it is hard to find a house, town home or an apartment in a modest neighborhood. Given all these challenges, we need to focus on the housing issue if we want those with autism (as well as those with other disabilities) to be able to live and participate in the community.
Perhaps my biggest concern about the prospect of living on my own is arranging for supports to assist me with daily living. In anticipating this future transition, my executive functioning difficulties in managing everyday tasks like (cooking, budgeting etc.)and also dealing with change (I am still adjusting to living in Washington state) are some of the areas I will need assistance with. I will need someone to act as a coach and provide emotional support. The hardest part is figuring out supports/services as well as finding the right people for the job. The good news is there are many different ways to arranging for support or care needs. Perhaps a roommate can help out or support workers (either from an agency or individual providers) that can come in and assist with daily living skills, errands/appointment as well as social/recreational activities. Another creative idea, is having caregivers that double up as roommates. This type of arrangement involves a roommate who receives free rent or receives paycheck in exchange for providing needed supports and services. Of course deciding which support arrangement will work best depends if an individual qualifies for state services or if they have enough money to pay for support workers privately as well as the availability of natural supports.
A third variable is measuring adaptive skills or living skills a person possesses. This means taking an inventory of skills the person already knows, skills the person will need to learn as well as tasks the individual will need help with. This can be done either through a person center planning meeting or a formal adaptive living skills assessment. The amount of living skills the individual already possesses and has the ability to learn will vary. Of course parents can help their loved one prepare and help master some living skills. Measuring daily living skills can help figure out what assistance he/she will need once they move out.
I believe independent living is possible for those with autism and other developmental conditions. There is just some extra planning and research that will need to take place. It is something to consider long term since living with family is not a permanent solution since parents/caregivers will eventually grow old to care for their adult offspring. I am aware that some families have chosen group homes or intentional communities for their loved ones. However, this post is mainly addressed to those families or individuals who want to live in the community. Autistic people deserve to have the same opportunities as those adults without disabilities.
Friday, August 2, 2019
Early vs. Late diagnosis
. Being in the self advocacy realm for quite sometime, I've noticed that there are quite a number of self advocates who got their autism diagnosis later in life (e.g. adulthood). As someone who was diagnosed with autism in early childhood, I just realized how lucky I am but also sad that a vast majority autistic self advocates went without help for so long . While I do have some things in common with the late diagnosed group, there are some differences just because of the fact that I received an early diagnosis. It is with this post that I will explore some of these differences.
Being diagnosed early in life gave me access to services and therapies to help me navigate my environment. Unlike a lot of late diagnosed autistics, I didn't spend most of my school years unsupported. My autistic traits weren't mistaken for "laziness" or "noncompliance" by teachers and other school staff. I had an IEP which helped those who worked with me as well as my general education teachers understand my disability and how to help me. In this sense I was privileged to learn most of society's hidden social rules (though I still struggle at times). On the contary, those diagnose in adulthood did not benefit from early intervention. They likely did not have an IEP that outlined their support needs, strengths and challenges related to their autism. Their challenges were either dismissed by those around them as "behavioral problems" or confused with a mental health disorder such as depression or anxiety. Being diagnosed early has the benefit of making it easier to qualify for services that can make day-to-day life a little easier.
The added benefit of being diagnosed in childhood versus adulthood is knowing the reason behind your limitations and challenges that you face is due to having a brain "wired differently" and is no fault of your own. Having my parents explain my autism diagnosis and what that means in terms of how I saw the world set the foundation of being able to advocate for my needs. Knowing that my difficulties of making friends and regulating my emotions were related to having autism saved me from the confusion and depression that so often face those who received their diagnosis at a later age.
That being said, there are also some challenges and issues that face those individuals diagnosed early. For instance, sometimes you can develop an attitude of "self handicapping" or putting artificial limitations on yourself due to knowing the fact that you have autism. This mindset might have been picked up from the way autism is portrayed from a societal perspective or from the way those closest to you have talked about your condition. Also those diagnosed early were likely put into therapies that adopted the "pathologizing attitude" of trying to eradicate the unique traits that usually accompany autism. For instance, you might have been placed in a social skills group that discouraged you from having "age inappropriate" interests and tried to encourage more "mature" interests or therapy that utilizes stim suppression without realizing that stimming is a way for an autistic person to self regulate. As a result of going through years of "normalizing" therapies, you might develop a low self esteem and resentment towards autism in young adulthood. Whereas those diagnosed in adulthood didn't have to participate in such therapies during their childhood and adolescence.
While on the topic of therapy and early diagnosis, I want to discuss some of the benefits of going through therapy as a child. The intervention that I received growing up has made me adopt a more "moderate"stance when it comes to ABA therapy. Though not all early diagnosed autistics will agree with my moderate stance, the majority of self advocates adopt a radical "anti-ABA" stance and think all behavioral therapy is autistic "conversion therapy." My belief is that with the right therapist and the ultimate goal is optimizing quality of life and working around limitations, behavioral therapy can be a positive thing. It would be erroneous to say that I did not tremendously benefit from behavioral therapy. For example, I learned a lot of coping strategies and self advocacy skills that higher my quality of life. Without that therapy, I would live a very limited life and would not have gone to college as well as getting a job. Seeing the benefits as well as some of the damaging effects of various interventions brought on by a childhood diagnosis can provide a more realistic and balanced perspective on this issue which will make it easier for the "pro ABA" autism parents to consider our experiences.
These are some differences that I observed between those diagnosed early versus those diagnosed later with autism. Please keep in mind that this blog post is based on personal opinions and experiences of one early diagnosed autistic self advocate and is not a general reflection of the experiences of all late diagnosed or early diagnosed autistics. People have different experiences and there are exceptions to every rule. There could be late diagnosed autistics who support ABA and wished they benefit from some of the therapy or an early diagnosed autistic who was so damaged by ABA therapy as a child that they staunchly oppose it. However, I want to write this post to give some perspective of some differences in case there are others out there who experience the same thing since age of diagnosis has great bearing of one's experience of living with autism spectrum disorder.
Being diagnosed early in life gave me access to services and therapies to help me navigate my environment. Unlike a lot of late diagnosed autistics, I didn't spend most of my school years unsupported. My autistic traits weren't mistaken for "laziness" or "noncompliance" by teachers and other school staff. I had an IEP which helped those who worked with me as well as my general education teachers understand my disability and how to help me. In this sense I was privileged to learn most of society's hidden social rules (though I still struggle at times). On the contary, those diagnose in adulthood did not benefit from early intervention. They likely did not have an IEP that outlined their support needs, strengths and challenges related to their autism. Their challenges were either dismissed by those around them as "behavioral problems" or confused with a mental health disorder such as depression or anxiety. Being diagnosed early has the benefit of making it easier to qualify for services that can make day-to-day life a little easier.
The added benefit of being diagnosed in childhood versus adulthood is knowing the reason behind your limitations and challenges that you face is due to having a brain "wired differently" and is no fault of your own. Having my parents explain my autism diagnosis and what that means in terms of how I saw the world set the foundation of being able to advocate for my needs. Knowing that my difficulties of making friends and regulating my emotions were related to having autism saved me from the confusion and depression that so often face those who received their diagnosis at a later age.
That being said, there are also some challenges and issues that face those individuals diagnosed early. For instance, sometimes you can develop an attitude of "self handicapping" or putting artificial limitations on yourself due to knowing the fact that you have autism. This mindset might have been picked up from the way autism is portrayed from a societal perspective or from the way those closest to you have talked about your condition. Also those diagnosed early were likely put into therapies that adopted the "pathologizing attitude" of trying to eradicate the unique traits that usually accompany autism. For instance, you might have been placed in a social skills group that discouraged you from having "age inappropriate" interests and tried to encourage more "mature" interests or therapy that utilizes stim suppression without realizing that stimming is a way for an autistic person to self regulate. As a result of going through years of "normalizing" therapies, you might develop a low self esteem and resentment towards autism in young adulthood. Whereas those diagnosed in adulthood didn't have to participate in such therapies during their childhood and adolescence.
While on the topic of therapy and early diagnosis, I want to discuss some of the benefits of going through therapy as a child. The intervention that I received growing up has made me adopt a more "moderate"stance when it comes to ABA therapy. Though not all early diagnosed autistics will agree with my moderate stance, the majority of self advocates adopt a radical "anti-ABA" stance and think all behavioral therapy is autistic "conversion therapy." My belief is that with the right therapist and the ultimate goal is optimizing quality of life and working around limitations, behavioral therapy can be a positive thing. It would be erroneous to say that I did not tremendously benefit from behavioral therapy. For example, I learned a lot of coping strategies and self advocacy skills that higher my quality of life. Without that therapy, I would live a very limited life and would not have gone to college as well as getting a job. Seeing the benefits as well as some of the damaging effects of various interventions brought on by a childhood diagnosis can provide a more realistic and balanced perspective on this issue which will make it easier for the "pro ABA" autism parents to consider our experiences.
These are some differences that I observed between those diagnosed early versus those diagnosed later with autism. Please keep in mind that this blog post is based on personal opinions and experiences of one early diagnosed autistic self advocate and is not a general reflection of the experiences of all late diagnosed or early diagnosed autistics. People have different experiences and there are exceptions to every rule. There could be late diagnosed autistics who support ABA and wished they benefit from some of the therapy or an early diagnosed autistic who was so damaged by ABA therapy as a child that they staunchly oppose it. However, I want to write this post to give some perspective of some differences in case there are others out there who experience the same thing since age of diagnosis has great bearing of one's experience of living with autism spectrum disorder.
Sunday, July 14, 2019
Autism and "Bad Days"
In this post, I'm going to discuss about a somewhat uncomfortable topic yet important to discuss. It is about the "difficult days" of living with autism. The days when using your coping strategies just fails. It is the days when you resort to using behaviors or go into a full blown meltdown. It can be do to a lot of things like autistic burnout things just don't go your way, menstrual cycle for females etc. Typical human beings have bad days when the demands of daily life just outweigh their current coping mechanisms. Unlike typical people, autistic people are made to feel ashamed for having bad days. Often, we are referred to having a "tantrum" or having "behaviors" when in reality they are having an "off" day. Consequently, we put pressure on ourselves to not have "off days" for fear that the people around us will be irritated that we did not use our strategies. However, holding and bottling our frustrations can destruct us from the inside.
For instance, there are days when I feel that self management and self regulation just fails me. When I get stressed, I would yell "meat!' out loud. If I get really agitated, I would slap my fist on the table or throw objects on the ground. However, my family (more specifically my dad and grandma) don't know how to deal with my outbursts. Their reactions (e.g. scolding, saying "don't do that") sometimes makes the situation worse or only furthers my escalation. They don't understand that I am in distress and that I don't behave this way intentionally.
Another instance where I was made to feel ashamed of my "outbursts" is with sessions with my behavioral therapist. Her confrontational personality would sometimes trigger me and I would start pounding my fists on the table or destroying objects etc. In response, she would get impatient and say "You should know better!" or "Why aren't you using your strategies that I've taught you?" Overtime, I was made to feel ashamed for expressing my distress because I feel that I should know better because I went through behavioral therapy that taught me self regulation skills and that I "should know better."
The truth is that even with behavioral therapy, there are still going to be times when self management fails you. When we are escalated, sometimes our emotional coping "tools" are not accessible to us. When there is a lot of demands on our plate, we may have used all our coping strategies in dealing with previous demands. When one more "stressor" gets added to our plate we can lose control very quickly. What I want those who care for and support someone with autism to understand is that even though our behaviors can be very startling and at times stressful, please understand that we don't intend to behave this way. We are just as scared and uncomfortable with our intense feelings and behaviors. Just like typical people, we need compassion and understanding during our bad days. A post that I found useful was written by two autistic self advocates that discuss the reason behind "meltdowns, self injury and aggression" that we so often display when we are escalated. We have bad days like everyone else we just might deal with them differently.
For instance, there are days when I feel that self management and self regulation just fails me. When I get stressed, I would yell "meat!' out loud. If I get really agitated, I would slap my fist on the table or throw objects on the ground. However, my family (more specifically my dad and grandma) don't know how to deal with my outbursts. Their reactions (e.g. scolding, saying "don't do that") sometimes makes the situation worse or only furthers my escalation. They don't understand that I am in distress and that I don't behave this way intentionally.
Another instance where I was made to feel ashamed of my "outbursts" is with sessions with my behavioral therapist. Her confrontational personality would sometimes trigger me and I would start pounding my fists on the table or destroying objects etc. In response, she would get impatient and say "You should know better!" or "Why aren't you using your strategies that I've taught you?" Overtime, I was made to feel ashamed for expressing my distress because I feel that I should know better because I went through behavioral therapy that taught me self regulation skills and that I "should know better."
The truth is that even with behavioral therapy, there are still going to be times when self management fails you. When we are escalated, sometimes our emotional coping "tools" are not accessible to us. When there is a lot of demands on our plate, we may have used all our coping strategies in dealing with previous demands. When one more "stressor" gets added to our plate we can lose control very quickly. What I want those who care for and support someone with autism to understand is that even though our behaviors can be very startling and at times stressful, please understand that we don't intend to behave this way. We are just as scared and uncomfortable with our intense feelings and behaviors. Just like typical people, we need compassion and understanding during our bad days. A post that I found useful was written by two autistic self advocates that discuss the reason behind "meltdowns, self injury and aggression" that we so often display when we are escalated. We have bad days like everyone else we just might deal with them differently.
Tuesday, July 9, 2019
What about the "Middle of the spectrum?"
I'm sorry that I haven't written a blog in a long time. I started a new full time job in January and have been acclimating to the job along with continuing to adjust to living in Washington state ( a separate post on this later). Now that I am on summer break, I have some time to squeeze a couple of blog posts. This topic has been on my mind and it relates to the topic of "functioning labels." Whenever autism is discussed, it is assumed that it comes in two forms: the "very brilliant Aspie"who appears to be very self sufficient but socially awkward and was able to get through life by camouflaging their symptoms or the "severely nonverbal autistic" who is unable to care for themselves and needs to be watched 24/7. This is the solid foundation of the commonly used "functioning labels" in society. Surely there are individuals who would fit the two autism profiles I just mentioned. What is missing from the conversation is those autistic adults and children who don't quite fit in the "very mild" or "very severe" categories.These are the individuals who would be in the "middle of the spectrum." Sometimes they are shoehorned into the high or low functioning labels. These are the individuals who would be in the "middle of the spectrum." Their experience or even existence is rarely acknowledged in the greater dialogue of autism . As someone who considers herself to be "somewhere in the middle" between the two extremes, it is hard to find a more balanced narrative of autism that matches my experience. It also creates a feeling of uncertainty within myself because I feel that people won't take my needs for support/accommodations seriously. It is with this post, I am going to explain why I feel to be "mid spectrum" and how the very mild/very severe dichotomy does a great disservice to people like me.
To begin, I wasn't one of those individuals who managed to camouflage their symptoms until adulthood. I was diagnosed with autism early in life. I had very limited speech, was socially withdrawn and appeared oblivious to my surroundings. I wasn't toilet trained until four years old and had intensive speech, occupational and social skills therapy during my childhood as well as adolescence.As a result of these therapies, I learned to manage my autistic characteristics to the point that I began to resemble someone with Aspergers or a neurotypical person. When people look at me now as a 27-year old young adult, they can't tell that I am autistic. Some people believe that I was always super high functioning throughout my life. In reality, I wouldn't be at the point I am today without all the help I received during my younger years. So how does this relate to the topic of "being mid spectrum?" My experience shows that some individuals started out very visibly autistic when they were young but with the help of therapies and support at school, they gained skills that makes them appear "mild". This shows functioning can change throughout life. This is why the high/low dichotomy doesn't work for me because it overlooks this fact that I've just mentioned.
Another issue in which the "high/low" dichotomy is falsely implied is in regards to support needs. Whenever this topic is brought up it is framed as either you need "24/7 support" or "you need no support at all." . It feels like if you can be unsupervised some of the time or you can articulate your support needs, then people assume that you need no assistance at all. The truth is that there are a lot of autistic people who don't need 24/7 care but still need assistance nonetheless.
For example, I can take care of my basic self care needs such as showering, eating and toileting. In high school, I faded my 1:1 aide so I can be prepared for college. I learned to take the bus to community college from my house so my mom didn't have to my chauffeur all the time. All the life skills I did learn enabled me to obtain my bachelors degree and obtain a full time job (though I had a job coach for emotional support).
Despite all of this, it would be erroneous to say that I no longer "require direct assistance" because I can be unsupervised and independent some of the time. There are still many areas that I still struggle with as a 27-year-old young adult. I still struggle with certain life skills such as cooking and cleaning. In addition to autism, I struggle with anxiety which can sometime get in the way of getting through the day. My difficulties with executive functioning, multitasking and sensory processing can make tasks like driving difficult. However because my speaking abilities are close to neurotypical and what I have accomplished so far, makes people overlook my challenges and limitations. Sometimes, I feel like I have to hold myself back or appear "more disabled" than I really am in order to have my support needs taken seriously. What I want people to take away from this is that allocating support for autistic people shouldn't be a black or white issue. There is a huge "grey area" who's needs are overlooked. You can still be independent and require assistance at the same time.
Another area where I feel that people in the "middle of the spectrum"are those with autism who can have basic conversations but have great difficulty talking about complex topics and feelings. They also can take care of their basic self care needs (like using the toilet, showering etc.). They wouldn't fit the "severe/low functioning" category. Yet, they wouldn't be considered mildly affected by their autism either since they still have characteristics and limitations that are visible to the casual observer. I know individuals both on a personal and professional who would fit the profile of abilities that I just described. Some of them can be very social and can remember important facts on preferred topics. Yet, they learn far below their grade and age level in terms of academics (reading, writing and math). They would be considered by clinicians, parents and teachers to have "moderate autism" or "level 2" autism. However, they tend to get overlooked in the wider autism discussion in favor of "mild" or "severe" individuals with the disorder. They wouldn't neatly fit into the very rigid "high functioning" or "low functioning" categories. These individuals have their unique abilities and challenges that is considered to be in the "grey area." Like people classified with severe autism. they tend to have their abilities discounted and be segregated from their neurotypical peers.
As from this discussion, autism is very wide and complex spectrum. No two individuals will be affected the same way and will have different abilities and challenges. What I want people to take away is that we can't ignore those who are "in the middle of the spectrum" or try to shoehorn these individuals into the "high functioning" or "low functioning"categories. If you want to read another blog about this topic Faithmummy, a mother of two autistic twins, writes about some of the challenges that come from being "right in the middle." We cannot neglect "mid spectrum" individuals when it comes to advocacy efforts.
To begin, I wasn't one of those individuals who managed to camouflage their symptoms until adulthood. I was diagnosed with autism early in life. I had very limited speech, was socially withdrawn and appeared oblivious to my surroundings. I wasn't toilet trained until four years old and had intensive speech, occupational and social skills therapy during my childhood as well as adolescence.As a result of these therapies, I learned to manage my autistic characteristics to the point that I began to resemble someone with Aspergers or a neurotypical person. When people look at me now as a 27-year old young adult, they can't tell that I am autistic. Some people believe that I was always super high functioning throughout my life. In reality, I wouldn't be at the point I am today without all the help I received during my younger years. So how does this relate to the topic of "being mid spectrum?" My experience shows that some individuals started out very visibly autistic when they were young but with the help of therapies and support at school, they gained skills that makes them appear "mild". This shows functioning can change throughout life. This is why the high/low dichotomy doesn't work for me because it overlooks this fact that I've just mentioned.
Another issue in which the "high/low" dichotomy is falsely implied is in regards to support needs. Whenever this topic is brought up it is framed as either you need "24/7 support" or "you need no support at all." . It feels like if you can be unsupervised some of the time or you can articulate your support needs, then people assume that you need no assistance at all. The truth is that there are a lot of autistic people who don't need 24/7 care but still need assistance nonetheless.
For example, I can take care of my basic self care needs such as showering, eating and toileting. In high school, I faded my 1:1 aide so I can be prepared for college. I learned to take the bus to community college from my house so my mom didn't have to my chauffeur all the time. All the life skills I did learn enabled me to obtain my bachelors degree and obtain a full time job (though I had a job coach for emotional support).
Despite all of this, it would be erroneous to say that I no longer "require direct assistance" because I can be unsupervised and independent some of the time. There are still many areas that I still struggle with as a 27-year-old young adult. I still struggle with certain life skills such as cooking and cleaning. In addition to autism, I struggle with anxiety which can sometime get in the way of getting through the day. My difficulties with executive functioning, multitasking and sensory processing can make tasks like driving difficult. However because my speaking abilities are close to neurotypical and what I have accomplished so far, makes people overlook my challenges and limitations. Sometimes, I feel like I have to hold myself back or appear "more disabled" than I really am in order to have my support needs taken seriously. What I want people to take away from this is that allocating support for autistic people shouldn't be a black or white issue. There is a huge "grey area" who's needs are overlooked. You can still be independent and require assistance at the same time.
Another area where I feel that people in the "middle of the spectrum"are those with autism who can have basic conversations but have great difficulty talking about complex topics and feelings. They also can take care of their basic self care needs (like using the toilet, showering etc.). They wouldn't fit the "severe/low functioning" category. Yet, they wouldn't be considered mildly affected by their autism either since they still have characteristics and limitations that are visible to the casual observer. I know individuals both on a personal and professional who would fit the profile of abilities that I just described. Some of them can be very social and can remember important facts on preferred topics. Yet, they learn far below their grade and age level in terms of academics (reading, writing and math). They would be considered by clinicians, parents and teachers to have "moderate autism" or "level 2" autism. However, they tend to get overlooked in the wider autism discussion in favor of "mild" or "severe" individuals with the disorder. They wouldn't neatly fit into the very rigid "high functioning" or "low functioning" categories. These individuals have their unique abilities and challenges that is considered to be in the "grey area." Like people classified with severe autism. they tend to have their abilities discounted and be segregated from their neurotypical peers.
As from this discussion, autism is very wide and complex spectrum. No two individuals will be affected the same way and will have different abilities and challenges. What I want people to take away is that we can't ignore those who are "in the middle of the spectrum" or try to shoehorn these individuals into the "high functioning" or "low functioning"categories. If you want to read another blog about this topic Faithmummy, a mother of two autistic twins, writes about some of the challenges that come from being "right in the middle." We cannot neglect "mid spectrum" individuals when it comes to advocacy efforts.
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