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.