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.