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. 

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