Being "moderate support needs" and how the self-advocacy movement overlooks my experience with autism

 It has been a couple of years since I last updated this blog.   However, this  topic has been on my mind and felt the need to write it out so I will be posting this to my blog.   I have been active in the autism self advocacy movement for a very long time since high school.  We have come a long way in making sure the voices of autistic people are included on issues that surround their lived experience.  I am grateful for that progress since historically the prominent voices of autism were professionals and parents.  

With that being said, I feel the autism/neurodiversity movement needs some improvement when it comes to accurately representing those on the spectrum.  As many people are well aware, the spectrum is very diverse and autism affects each person differently.   In social media as well as on movie and tv shows,  I feel autism is portrayed in one of two ways.  You see people who are low support needs.  In which those who are highly masking and learned social skills by learning their neurotypical peers.   They may drive, have a full time job and be married.  These individuals may come across as socially awkward or rude to other neurotypicals.  Support for them may look like meeting with a mental health counselor one time a week or needing work accommodations like altering their tasks.  Their support needs are minimal.   Then on the flip side, you have individuals who are non/minimally verbal who are considered   high support needs.  They may need full time care and need to cared for 24/7.  They may have violent meltdowns and may not have safety awareness and would engage eloping behaviors.  Oftentimes, their caregivers are their voices since they need help to advocate for themselves.

As someone on the spectrum whose experience does not fit into either low or high support needs, I feel that my experience is often not represented between the two sides .   For those who don't know about support needs and how they relate to autism, the DSM assigns a level based on how significantly autism affects your daily functioning and how much assistance you require to be able to live a quality life.   Level 1 means you require the least amount of support, level 2 means you require a moderate amount of support and level 3 means you require the highest amount of support.    

In terms of my own support level, I consider myself to be level 2 or having moderate support needs.  I know some people might look at me assume that I am low support needs because I am fully verbal and don't have an intellectual disability.  However, I still need significant support in my daily life and qualify for developmental disability services based on substantial daily functioning limitations.  I can't drive and have recently quit my full time job since it was too draining for me.  I still struggle with making friends and social interactions despite having intense social skills training when I was younger.  As a result, I have a limited social circle and need help in meeting new people.  I am not a high masker (which is typically seen in  those with level 1 autism ) as I stim in public carrying (carrying a fidget) and feel the constant need to move my body like jumping in public which is noticeable to people.  I get stuck on particular topics and special interests where I sometimes I have to be redirected.  When I was a child, I had developmental delays and did not have functional speech until I was about four years old.  I had intensive support in the form of speech, occupational and behavioral therapy as well as having a paraeducator support for most of school career.  If I were to live independently, I know I would need a lot of support from caregivers and coaches in order to be successful.

A lot of the self advocates with autism I come across online are typically late diagnosed/self diagnosed low support needs autistic adults.   My issue with these self-advocates is that they sometimes forget that not everyone experiences autism the same way and they make statements that come across as insensitive or dismissive of my experiences as someone who lives with level 2 autism.  For example, some self advocates describe that autism is a difference rather than a disability and it needs to be eliminated as a medical diagnosis.  When I hear statements like this, I feel that my support needs get minimized and am afraid that it would become harder for me to access accommodations that I need.  It is already hard for me to ask for help or feel that I will have my support needs taken seriously because I am fully verbal and do not have an intellectual disability.  It is also stigmatizing to those people with level 1 autism that experience a mental breakdown due to heavily masking.      

Another way I feel that some low support needs self advocate minimize my experience is that they use their successes (e.g. being married, driving a car) to bring themselves up while stigmatizing those who won't be able to those things because of their autism.  I know that there are negative stereotypes associated with autism and not being able to marry and driving, but please don't discount those who are not able to drive and/or get married and have children due to their disability or personal preference.   Knowing my disability and support needs, I know that having a family and driving would be challenging for me.   Having a family or driving a car should not be used as a determinant of success for people on the spectrum.   The superiority and one upping that occurs from those on the spectrum who have low support needs is called Aspie supremacy.  Before 2013, Aspergers syndrome was an official diagnosis given to people who did not experience an early language delay in early childhood.   Now it is merged with autism spectrum disorder and is considered to be level 1 autism.   Every person with autism is capable of living happy fulfilling lives.  Independence looks difference for everyone on the spectrum.  To presume that having a full time job, getting married, having kids are the only valid ways of what success is ableist and fulfiling a capitalist narrative.

As someone who considers herself "in the middle" of the vast spectrum of autism, it is frustrating in trying to find community within autistic spaces.   There are not too many presentations of people with moderate support needs.  One tv series on Amazon prime, As We See It is the first tv show that I related to as it portrayed the struggles and feelings of three autistic adults who share an apartment but have an aide who checks up on them and assists them in various aspects of daily life.  While the show has flaws, I felt it was the most realistic portrayal of autism as most characters that are typically portrayed are low support needs.   It is shame that Amazon did not renew it for a second season which demonstrates how unplatable the experience of having medium support needs is to society compared to the experiences of autistics with low and high support needs.   This is the reason why I wrote my second book The Revolving Door: The Untold Story of Disability Support.  It is based on my own experience of having support people and the struggle when a caregiver quits and having to find the right match.  I also wanted to show the struggle of Fiona getting her support needs taken seriously as a verbal person with autism.   

In sum, the autism community needs to do a better job of including people who have moderate support needs.  Too often, the discussion is focused on either parents who have children with high support needs that are unable to advocate for themselves or the low support high masking self advocates.  I feel both sides minimize my experience living with autism and my support needs.    People have their own experiences with autism and know their own support needs the best.  We need to stop policing and minimizing other people's support needs online based on only getting a snapshot of their lives.  Going beyond the support levels, everyone's experience with autism is unique and having one group of self advocates  attempt to speak for everyone could lead to inaccuracies of the autistic experience and leaving other voices left out.   There is the saying in the autism community if you met one person with autism you met one person with autism. 

 

  

Fathering Autism and why we need to address the existing divide between Self Advocates and Parents.

    What prompted me to write  this post was this video made by an autistic self advocate falsely accusing autism family Youtubers Asa and Priscilla Maass (who run the popular autism channel Fatheringautism) of abusing their nonverbal autistic daughter Abbie.    What resulted from this accusatory  video was the Maass family getting a visit from Child Protective Services as documented in their daily vlog yesterday.    From watching their vlog,  you can tell that Asa was furious that someone would make such an accusation when it is apparent from watching their videos that they are genuinely caring parents who want the best for their daughter.    This incident is an example of why we need to keep talking about the existing divide that continues between autistic self advocates and parents of autistic children.  It is with this, I'm going to discuss how the good intentions of this channel can sometimes be misinterpreted by self advocates.

The first reason why the Fathering Autism channel gets so much hate is their belief in ABA therapy in helping Abbie learn new skills.    A lot of autistic self advocates are against ABA therapy claiming it is abusive and is based on compliance training.  However from watching this channel, it is apparent that Abbie's ABA therapist doesn't utilize the methods that traditional Lovass style therapists used back in the day.  Her therapist, Brandy,  comes into Abbie's house and work with her learning life skills (e.g. putting groceries away, setting the table) and she gets to choose what tasks she wants to work on.  Sometimes Brandy and Abbie do community outings such as going to the Post office or stores like Target to get her use to going out in public.    In fact, Asa addresses the concerns of ABA therapy  in this video that was made back in January.

    When I was a teenager, I received therapy similar to the style that Abbie has.  My therapist came to the house and she worked with me on self advocacy skills and emotional regulation.  We would do community outings like going to the mall, the grocery store or go volunteering.   There was nothing coercive about the therapy I received as I was allowed to ask for a break when I needed it.  My behaviorist never suppressed my stims as she recognized the function of it.  I can attest that if I did not work with a behaviorist, I would not have the coping and social skills to manage to get through college or even hold a full time job.     However, before I started working with that particular therapist, I did work with an ABA agency at school who insisted that I have an IEP  goal to stop jumping up and down without recognizing the sensory need behind it.   Luckily my mom recognized the harm and asked to have that particular agency to stop working with me.  The difference between the two styles of ABA therapy I received shows how the therapy can vary and that not all practitioners use the same method.  Asa  even addresses this in his video with Abbie's therapist.  ABA and other interventions can be very beneficial if it is used to teach the person on the spectrum new skills versus trying to make them appear more "typical."     If it wasn't for ABA, Abbie would not be able to have the same opportunity to experience the world like her typical brother.  The Maases' are able to go out as a family because Abbie for the most part is able to manage being out in public.  Autistic people of all  abilities  need interventions and support to grow and reach their full potential.

For those that believe that the Maass family are one of those "autism parents" who are not open to hearing the  insights of autistic people and are just exploiting their daughter for views.    I want to address how Asa attempts to understand their own daughter by consulting with other autistics such as Jen Msumba and Dan of the Aspie World .   By doing these videos, both Priscilla and Asa recognize the value of self advocates in trying to understand why Abbie does certain things.  As a result of interviewing Jen, Asa says that he has changed the way he vlogs by turning off  the camera when Abbie is in the middle of a meltdown saying that he doesn't want his daughter's worst moments portrayed on camera.  Unlike the typical autism parent who usually dismisses the views of other autistics by stating that they are not "like their child," the Maases recognize the similarities (as well as the differences) between Abbie and other self advocates with less intensive support needs.  The autistic woman whose channel I referenced at the beginning of this post was totally off base in her accusations of Fathering autism by overlooking the good things this channel has done in educating the wider world on autism.

Another instance  I know of in which this popular autism YouTube channel gets a lot of backlash from self advocates is the discussion Abbie's  struggles with specific hygiene tasks.  A specific example of this is in regards to the potty training video Asa puts up and discusses in detail  Abbie's toileting routine.   Self advocates point out that the discussion of Abbie's potty training issues on a public platform like Youtube is dismissing her humanity and right to privacy regarding those matters.    As an autistic person,  I can understand  this perspective as I would be humiliated if my mom started a Youtube channel documenting my early potty training struggles as well as showing footage of me sitting on the toilet.    A person's toileting issues such as incontinence as well as needing assistance with those things is a delicate matter that should be treated with respect and dignity.  Just because someone has a disability like autism and can't give consent easily, doesn't mean we should not respect their privacy.    

    On the flip side I can understand Asa and his intention of making such a video.  I can see how it can be educational to someone who is not familiar with the challenges autistic people face in learning crucial life skills like using the bathroom that most people take for granted.   A lot of people are curious about these types of issues or are looking for tips to use on their own child.  By watching their videos , I really believe that Asa made that video as a tool for education and not to intentionally embarrass Abbie or put her in an awkward situation.  However, I can see how other people can see it as exploitation or not respecting Abbie's right to privacy.  But as I referenced earlier,  Asa changed the way he formats his vlogs by not filming Abbie in vulnerable situations (e.g. the bathroom) as a result of talking to Jen.

The Fathering Autism situation leads me to the next point in this blog on the intense and deep division between self advocates and parents.   On one extreme you have autism parents who believe autism as a disease that needs to be cured.  They dismiss autistic self advocates with lesser support needs of not knowing what "real autism" is.  Some parent advocates will go so far as to question the legitimacy of the self advocate's autism diagnosis and are also dismissive of the actual and legitimate support needs of these individuals.   On the other side, you have autistics who are against all types of therapy and interventions and see autism as a "difference" rather than a disability.   They feel that parents are hogging the autism spotlight and believe that any parent that advocates on behalf of their child assumes they don't have their child's best interest at heart.  I have heard of some instances of  autistic runned Facebook groups shutting people out if they disagree with some of their viewpoints .   Others will simply refuse to listen to the viewpoints of any neurotypical in regards to autism.  As an autistic self advocate who is passionate of making the world a better place for those on the spectrum,  I feel these extreme approaches to advocacy employed by both groups is harmful to the greater autism community.  It doesn't get us anywhere and it overlooks some of the similarities both groups have.  Autism is a wide spectrum with so many different viewpoints which is why it's important to be open minded to hearing from different perspectives rather than tearing each other down.   The extremism that exists in the autism community was apparent in the actions of the autistic woman  making videos accusing every member of the Maass family of child abuse.  The way this woman uses her autism diagnosis as an excuse to make slanderous claims is very despicable and makes me and other self advocates look bad.  I am afraid that parents won't want to listen to us for fear that we will accuse them of child abuse.  I also want to make clear to not let one bad apple turn you off from self advocates as a group.  Autistic people have different advocacy styles from one another and not all advocates share the same opinions.  This is why I stay away from advocacy groups that take extreme all or nothing approaches.  I like to be part of groups in which self advocates and parents work together in unity.

The reason why I watched FatheringAutism in  the first place was because I wanted to learn more about  someone living with severe autism and the challenges they have to go through.   I have no  experience of what it's like to live as a nonspeaking person with autism  where it is hard to express complex thoughts as well as needing every task broken down into simple steps.  What I love about Asa and Priscilla as parents is that they continue to push Abbie to become independent so she can have the best life possible as an adult.  Unlike a lot of other parents of  children with autism with high support needs, they don't paint Abbie's life as tragic and don't sulk at all the things she can't do.   They continue to persevere even when things get tough.  I've learned a lot about the challenges that people who are severely impacted by autism and what their families have to go through.  I also realize some of the similarities I share with Abbie in regards to sensory issues, anxiety as well as being a female with autism.  I also feel that Asa and Priscilla are good parents and I don't look down on them for using ABA on their daughter.     It also makes me happy that Abbie is now able to enjoy going out into public places as a result of ABA and not be stuck secluded at home.    Her world gets bigger and people get more comfortable with Abbie the more she goes out into her community. To discount those theraputic gains I feel is robbing Abbie of an opportunity to take part in the world.  I also love that Asa uses his channel's reach and fan base to promote some Autistic runned Youtube channels  like Rebranding Autism.  He uses his position as an autism parent to help close the disconnect between self advocates and parents.  The message that Asa tries to promote through FatheringAutism  is so important for people to hear.  

Covid-19's effects on Disability Support Services.

It's been awhile since I last wrote a blog post.  I've been dealing with the uncertainty of COVID-19.  This topic has been on my mind recently as the pandemic seems to not be going away anytime soon.    I know I wrote a post about COVID-19's effects on autistic people and other disabilities back in April.  However, in this post, I want to go in depth about how disability supports services are effected by this pandemic.  For me and many other disabled Americans, we rely on paid supports to help manage the limitations and difficulties that come with our conditions.  However, due to social distancing and governmental proclamations and restrictions, many of the supports that people like me so desperately rely on are disrupted or put on hold.    While I'm not denying the importance of social distancing to slow the spread of the virus, there's a downside that  these policies have that is only apparent in the lives of people with disabilities and those that care for them.  It is rarely discussed and is not an issue of concern by our public health authorities and government officials.    It is with this post, I'm going to be discussing how the Coronavirus pandemic has disrupted services and supports for  millions of consumers as well as their families as well as sharing my experience about this issue. 

As I said before, social distancing precautions have made the lives of people with disabilities (as well as their primary caregivers) 10 times harder.  If people do get support services during this time, it is simply a daily phone call.  However, as this article in The Guardian  states, people have had their care services put on hold due to restrictive policies of social distancing and are suffering as a result.  People with disabilities such as autism often have physical and emotional needs that cannot often be met over the phone or web based platforms such as Zoom.   I remember when my state issue a stay-at-home order,  I had to discontinue outings with my companion for a month and a half.  The only way we can communicate is through FaceTime and texting.  Though I was happy to talk over the phone, I did not get the same emotional benefit like I did through our in person outings in the community.  I was happy when my support worker agreed to finally meet in person again.  In this case, I am very lucky and grateful that my companion agreed to continue in person services but for many others this is often not the case.

Another issue is that people who live in assisted living facilities such as group homes cannot have visitors including family members in order to protect its' most vulnerable residents.  However, parents are reporting that their children are suffering from regression due to not providing in person care and comfort.   Family members are also part of the "checks and balances" to make sure the group home is taking care of their loved ones adequately.  With family members not being allowed to visit can allow signs of abuse to go undetected  in their loved one with a disability as they have to rely on the hands of the staff that work in these homes.

Another example of how social distancing protocols has created unecessary inconveniences in terms of paid services, is that one of my support workers who is supposed to do community activities  with me is not allowed to transport me in her personal car according to the agency's policy.  In order for us to meet in person, my mom would have  to drive me to meet the support person or we can take the local Paratransit system which I believe the latter is less safe from infection than riding in a personal car. We've asked if we can get a waiver to transport me if we both employ basic safety precautions  (e.g. using masks), but we we're told no.  What is frustrating about this situation is that this decision did not take into account of my individual needs and the "all or nothing" approach that was utilized. Since the support worker cannot transport me,  we are limited in what activities we could do.  Since this has created so much inconveniences on my mom and me,  I am left to wonder if I should put the service on hold until she  can provide transportation services for me.

You may be wondering what ideas or solutions would be effective to address the issue and challenges that disabled people face as a result of not receiving paid in person services during the pandemic.  I think a great first step is recognizing the value of direct support professionals as essential workers.   These individuals provide physical as well as emotional supports to clients with disabilities and for some are the only source of support.  Another idea that comes to  mind is having clients as well as caregivers sign waivers allowing in person support.  By doing this, both the support worker and the client accept the risk of possible COVID-19 transmission  if they want to resume or continue in person services and therefore prevent further routine disruption and deterioration of  physical and mental health.    Of course, proper safety precautions (such as masks) should be employed by both parties if services are to be conducted in person.  I feel these suggestions are a happy medium of ensuring safety but also making sure that people with disabilities are getting their needs met.  I understand that there are some disabled people ( as well as caregivers) who are considered medically fragile or live with someone that is vulnerable and are afraid of getting infected.  However, I feel this should be a decision on the individual level not on a systematic level .  For people with disabilities who are not medically at risk, the halting of paid supports can take a toll on physical and mental health from unmet needs. We are already feeling isolated before and during this pandemic due to cancellation of social activities. It is frustrating that government officials continue to overlook the needs of the disabled population.

Coronavirus, Social Distancing and its effects on autism

As everyone is well aware, the Coronavirus pandemic is wrecking havoc worldwide.  As the number of Covid-19 cases increases, some states have declared lockdown orders and schools around the nation have closed for a long period of time. Due to the closures and restrictions (e.g. social distancing) to prevent the spread of the virus, all of us (whether we fall at risk or not) are affected and have to adjust to a "new normal."  This means we probably are  going to have to stay at home for awhile (except for essential purposes) and not socialize with our friends and other loved ones.  While these drastic measures are hard for everyone, it is especially hard for  the autistic population.  As you know, a lot of autistic people thrive on routine and having our normal activities disrupted due to closures and restrictions can cause our anxiety to skyrocket.  It is a tough time for us as we are  slowly processing the fact that there is no definite end date to this chaos.  So with that in mind, I am going to write about how this pandemic is effecting the lives of autistic people.

Perhaps the biggest factor this pandemic has on people with autism (as well as other developmental conditions)  is social distancing  Before people get defensive and argue with me saying "social distancing is necessary to prevent the spread of the disease to vulnerable populations such as the elderly and those with underlying medical conditions,"  I want to be clear that I am not being dismissive or downplaying the seriousness Covid-19 has for some people.  I understand that this is a topic full of great sensitivity for some people, but I want to share a perspective that is not widely shared when it comes to the effects of Coronavirus.    As we are well aware,    social distancing has been shown to "flatten the curve" and will help us in the long run to combat this virus. However, this comes at a cost for autistic people( as well as those who care for them)   who often strive on routine and predictability.  This  article explains how social distancing can pose some challenges for people with autism and their families.  These effects range from having to help with personal care tasks to dealing with the emotional toll as a result of the disruption of routines and normal activities like schools closing , not going to a  favorite restaurant or seeing familiar key people.

 Last week, all of my routines and daily activities came to a sudden halt due to recent social distancing precautions.   My workplace is closed for a minimum of six weeks (I work at a school, and schools in Washington are closed for a minimum of six weeks).  Weekly community outings with my support person that I cherish are cancelled for a time being.  Due to closing of nonessential businesses such as restaurants, we are eating at home. I had to spend and celebrate my 28th birthday at home.  All of these sudden changes coupled with the fluidity and ever changing nature of this situation, has caused my anxiety to skyrocket.  Needless to say, the last couple of days were tough for me as I had to process all these changes. It is only recently that I began to accept my new situation and came up with activities to fill my time.   Me and my family try to go out and exercise together.  All the free time that I now have has allowed me to work on projects (such as the play I want to write) as well as writing blog posts such as this one that I wasn't able to do because of my busy schedule.  So I am trying to look at the silver lining of this whole situation.

This leads as to what solutions or strategies would help autistic people get through these tough times.    There are social stories that explain what the Coronavirus is and why it's important to take safety precautions like frequent handwashing and social distancing.  However, the most important thing for those who care for someone with autism is to acknowledge and recognize their disappointment or sadness of having their routines and daily activities disrupted .  What also helps is explaining to the person that this will not last forever and that we have to utilize "social distancing" precautions (like not going to a favorite restaurant or seeing favorite people) so we can conquer the virus faster.  Lastly,  if you or your loved one can't see key favorite people (teachers, therapists, friends, support staff), you can keep in touch  via texting, skype and other virtual messaging during this time. Lastly, try to find key projects and activities you can keep busy while at home.  As stated before, I am working on writing a couple of blog posts and composing a play about autism.  While these strategies  will not entirely alleviate the anxieties  that autistic people feel in the wake of the Coronavirus pandemic,  it will help deal with it a little bit better.  We are all living in uncertain times right now and it's important that we reach out to each other especially our disabled and autistic members.

Update on my transition of living in Washington State: It's a Process

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.

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.

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.