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.  

Addressing the employment problem with autism

According to a U.S. News article, many young adults with autism are more likely to be unemployed compared to adults with other disabilities.  This is a very glooming statistic considering that many young adults on the spectrum are considered to be very good workers and have a lot to offer as employees.  The unemployment issue with adults with autism is compounded by the lack of adequate job supports (e.g. a job coach) that can help individuals with autism spectrum disorders navigate the world of employment and the interpersonal interactions that are often required of most occupations.  This issue hits home for me as I am a newly college graduate who is embarking on the world of employment.  To make things more complicated is that most supported employment or vocational training programs are only equipped to dealing with those individuals who are more impacted by their disabilities and are only capable of securing menial jobs (e.g. working at Target or Ralphs as a box boy) .  For me,  finding a meaningful job which has a supportive and nurturing work environment is my top priority.  With that said, I will now offer some tips and solutions of how we can create more meaningful employment opportunities as well as how to create more supportive work environments so our adults on the spectrum can succeed in the work force.

1. Accommodations

The first thing I would suggest is that prospective employers need to create more accommodations for those on the spectrum that will allow them to complete work tasks successfully.    Too often, I feel that a lot of  time is spent on teaching the spectrum population to conform and integrate but it is a two way street.  Employers need to be understanding and aware of the challenges autism brings  and should take the effort in working with them and be sensitive to the limitations of those on the spectrum.  Some suggestions of useful accommodations that employers should use is visual aids and schedules such as creating task lists and also breaking down a task into step-by-step instructions that are manageable and easy to understand.  With an accommodating work environment, adults with neurodiverse conditions like myself can feel confident and become productive employees.

2.  Creating a Supportive and nurturing work culture

For me, the ideal work environment is one of collaboration in which each employee has a set of skills and experience that they can bring to the table.  Instead of having a one-way hierarchal system in which the boss has all the power and gives commands to the employees and suboardinates, I want an environment in which I can have an honest and open discussion with my supervisor and co-workers in which we can give each other feedback of how we can improve the productivity and operation of the entire business or company.  Like I said before, people on the spectrum have a lot of skills and experiences to employers and having a warm and nurturing work environment enables them to use their talents and skills.

3.  Having a nurturing supervisor
I talked a little bit about this in my previous point but a supportive boss or supervisor can make all the difference between really loving your job or hating it.  After all the boss is the one that writes your paycheck and the supervisor is the one you will be dealing with on a daily basis.  Overall, people on the spectrum generally do well with bosses and supervisors who have a generally calm demeanor and can help mentor them in gaining valuable work skills and experiences.  They allow room for mistakes or errors and treat them as learning experiences.  I personally like a supervisor who will take the time to get to know me as a person and learn about my strengths and weaknesses.

With these three main points, people on the spectrum can be productive workers who can make a living and feel good for what they do.  As Steve Silberman said at an event I attended at UCLA, "workplaces need to change to address the needs of those on the autism spectrum."

Being an Asian American and a female with autism

I never written about my experiences about what's it like being both a woman and a person of color on the autism spectrum.  But I think it's a topic that's important as both females and ethnic minorities are vastly underrepresented in the autism community.  There is also less talk of how these identities intersect and how the experiences and perceptions of autism are different due to intersectionality.  Let me start by saying that I am one of the few Asian American women (or part of an ethnic minority groups for that matter) who is very active in the autism community.  Most of the self-advocates I know are white.  While I am happy that there are autism self advocates who can tell their story, I feel sad at the same time that there aren't so many others with intersecting identites (e.g. being part of an ethnic minority group and a woman) out there telling there stories.  In addition to my personal experiences with being autistic,  I had to deal with marginalization both as being part of an Asian American but also being a female and the negative stereotypes associated with it.  I never really thought that hard about these identities until I started taking college classes that dicuss marginalization due to both gender and race.  This is when I began thinking deeply about how these statuses began affecting my life.   The vast majority of people on the autism spectrum that I personally know are mostly male.  I can honestly say that the boys with autism are different from me in terms of interests and the way autism is express.   I sometimes wished I knew more girls on the autism spectrum and that interventions for people on the autism spectrum had a component of emotional support instead of being ( there will be a future blog post of what I mean by this in the future) based on just learning skills.    I also have to deal with stereotypes associated with traditional gender roles that  conflicts with my autism like being into fashion and trends and the expectation that I have to be social.  Having autism, social interactions are hard because of my social anxiety and I am also an introvert (another post on this will be discussed later).  Since girls and women are expected to be social, it is hard to conform to this stereotype and the negative perceptions that I would viewed as cold and uncaring for not conforming.  

Now I will discuss my view of autism in terms of my race.  I cannot speak about the African American or Latino perspectives since I don't have much knowledge  about those two ethnic minority groups but I will talk about the Asian American perspective on autism spectrum disorder.  What I am aware is that the Asian American community tends to be silent when it comes to special needs which include autism.  They tend to not want to get involved in the autism community because it's a sign of personal shame and all about the honor system.    The reason why I am so open about my diagnosis is because my parents were not the typical Asian family.  My mother was involved in numerous autism groups and was dedicated to making sure I got the best interventions and services that will help me thrive.   However where my Asian American identity intersects with my identity of having autism is that I want to be very open about my condition but at the same time the Asian American community (especially the Japanese American community) is not very open and accommodating about my disability.  This is why I maintain sort of distance from the Asian American community.  These stories of double marginalization in addition to the autism diagnosis are seldomly shared and how the expectations due to one's race and gender can conflict with autism and how it is hard to identify with people of either groups because they don't share the same experiences.  I am happy that I can share both my experiences of being a woman and a person of color on the autism spectrum.