Autism & Asperger's Discrimination, Isolation, a Difference, Bad Luck or Attitude.
By Tim Welsh
I have felt the brunt of bullies, abuse, and discrimination throughout my life. About a dozen examples come to mind. These are all life changing and not in the garden variety restaurant or grocery store nasty comment or glare. Now before I get started let me say although I see heredity at play in our family my Grandfather, Father and myself fall into the "just a little different" category and have never been diagnosed formally as being on the autism spectrum. I would say we all were autism level 0. The category of those that can contribute without assistance but are on the outside of the social mainstream.
I am bringing up these five situations just to give examples of what those on the spectrum may face and not be able to defend for themselves. At some point we will have to address these issues for parents and adults on the spectrum. The original title I had for this piece was "What does discrimination towards parents and those on the Autism spectrum look like?" I thought about it and wanted to make sure that you understand that I take full responsibility for getting myself into these situations. Although, in each one Judges, adjudicators and counselors have found that I had reason to suspect discrimination.
The five situations can be broadly described in the following way. 1. Emotional reflection of a manager and outburst. 2. Lack of sleep impacting job performance / Not taking family needed family time. 3. Removal from a non-profit board after phone meltdown. 4. Denial of Positon / Does not meet "Requirements" 5. Taking things literally - Whistle-blowing. Reporting demeaning behavior and crude jokes in the workplace.
Imagine yourself in a closed door, private employee meeting. Described by the manager as a "Come to Jesus" sales meeting. A very aggressive manager has 8 of us cornered and is screaming at us. I counted the "F - bomb" being dropped 15 times. I was uncomfortable being in very close quarters to my peers. I analyzed and agonized over every word over and over and each personal attack hurt more. After personal confrontation and rule changes I was very frustrated. So at my breaking point I lets loose in reflection with a "Grow some F***ing Balls." Immediately the room was cleared and I was let go from the company. To this day I do not understand why others can cuss all day and I drop one "F -Bomb" and I get censured.
Illustration number two is as much as a warning as it is example of what can go wrong. I had been sleep deprived for a couple of weeks ( More than usual). Tanner had to be taken to the hospital I was feeling bad ( Maybe Guilt?) for not being with Cheri. I was keeping touch via the phone. I told my direct manager not to expect to much from me that day. Cheri called and asked me to get prescription for Tanner at lunch and bring it home. Another manager came up and asked me to do a project right before lunch. I did it very rapidly. I bumped the new product and thought I may have damaged it. Got out looked. Saw no damage and went to lunch. Upon return from lunch I was let go for not reporting damage even though there was none. Again the learning experience was sleep deprivation can get you in a heap of trouble. Take time to be with your family when you are needed. Be upfront with all managers.
I see irony in the fact that some Autism non profits do not know how to handle individuals on the spectrum. Those in the Neurodiversity advocacy groups claim they are actively discriminated against. I have two examples of this. I live in a remote downstate rural area of Illinois. So many of my board and volunteer positions have been through Skype, Go to meeting or phone. In one particular situation I was developing a business Idea and decided to contribute ( Donate) the program to a charity. The charity was having severe financial difficulties, so a outside "leader" of the community with "Contacts" was brought in. He was a talker. Many times I would be on the phone for two hours and not say a word. Well after discussion of my proposal he suggested doing the project on their own and excluding my group. I had a meltdown and again said a few words I shouldn't have said. Within hours I got an email informing me of my removal from the board.
The latest experience was a request to be on the Board as a Director. I volunteered and was accepted. Now due to fluctuations in our economic status ( Being Broke and out of a job) and being a primary caregiver for Tanner. I have not been able to be a very active participant in activities and pay all the dues. I did however volunteer when I could and gave them advertising, social media support, grant support, and other tangible donations of time and energy. So this week I get this letter:
"Hello Tim,
I thought I would be able to speak with you in person, about this but you were not at lunch on _____ this week. I always thought you are member of ______ because you come quite often on the ____ lunch times. I am sorry, but you cannot be a board member unless you are a dues paying member. You do not meet this requirement and you will not be able to serve on the board. I have filled that position and perhaps in the future, when you become a member, we would be able to have you serve in that capacity. Thank you very much for your interest in the job. I really appreciate you offering to serve."
I am pretty sure there is more to this than a few dues being due. I had fully intended to do whatever was needed to meet the requirements of the board. My frustration and anger overflows at the embarrassment of this situation. I doubt I will set foot back into this group. The sad part is I doubt any of them have empathy or have taken the time to learn a little more about our situation over the almost ten years that Tanner and I have been involved with them.
Finally, one of my challenges has been the taking of things literally. You know, that open door policy every leader of an organization has? We are told any idea or issue we would like to pass up the ladder. Throughout my various careers I have been very eager to share my ideas. I did not realize until many years later my various calls to CEOs and Presidents really disturbed my boss, my Boss's Boss and My Boss's Boss's Boss. The one that comes to mind is where I reported a manager to Human Resources for telling sexist and racist jokes in the work place. Now this was not a one time one liner things. Many of his jokes included pulling up his shirt, unbuttoning his pants and physically requiring action of the employees he duped into participating in his jokes. I was mortified at the way he would demean and speak to minorities and women. There was a short investigation but supervision and management remained the same. I was told since I was neither a minority or a woman only they could not put in a complaint. I feel to this day I was treated differently by management after these reports.
I will leave it up to you to decide if these honest examples of my experience and feelings reflect in anyway the reasons those on the spectrum are not given a chance in the workplace. I have learned a lot but know I am gullible and easily manipulated. I pray my honesty here helps you and your loved one traverse the next few years in dealing with school, community and work place situations. I do know more of these situations will happen unless the wave of adults on the autism spectrum are given some accommodation, and real education / change takes place. As always I love to hear your comments, share your personal situations, or just give me a shout out @TannersDad Tim
Tim Welsh, is one of the most active and influential Parent Advocates for Autism. Avid Speaker, blogger, and Tweeter (@TannersDad). Tim works to build unity within the Autism community, Gain Insurance coverage reform, End Restraint & Seclusion, Advocate for services, prevent wandering and much more. Tim & his wife Cheri have one son Tanner (16).
Favorite tweet…
“I have a son he has autism, but, I also have dream. I dare dream of a world where profound regressive autism is not only treatable, but is also preventable”
How long until a Dr like Dr. Richard Saul, University of Chicago Behavioral Neurologist and author of "ADHD Dies Not Exist" http://www.harpercollins.com/books/Adhd-Does-Not-Exist-Richard-Saul/?isbn=9780062266736 comes out publicly saying that Autism too does not exist... but is only a collection of other untreated and unrecognized social symptoms, physical/psychological/educational dysfunctions, and diseases or conditions thus not a diagnosis of its own.
Posted by: Renee Suzanne Cole | March 10, 2014 at 11:09 AM
Dear Tim, You have asked for suggestions; here are mine.
First you have a Large Supply of Empathy. Well, that’s very nice, the world needs it. You seem to want to know when it can be used and when it will cause you to be rejected. Let’s just ask, should you have helped that employee re the harassment she was undergoing? ‘Love’ says yes and ‘Justice’ says yes, but that does not necessarily mean you should jump into the fray. If you want to keep your job you cannot challenge the management left, right, and center. It just isn’t done.
For most folks there would be no conflict – they would just know that Conformity is the order of the day (or Timidity as the case may be). Ah, but I hear you ask what about love and justice? Perhaps the most you should have done is go directly to the victim and tell her that you sympathize and that you think the man’s actions were outrageous. Maybe point out to her that she can go to the supervisor or the union rep. In other words, study the official structure of power at that workplace – all is not pure democracy!
I understand that you thought you could and should do more. You probably think that your insight into the morality of the situation can change the outcome. Well, here’s the proof that you misjudged that – you got the boot.
So my suggestion – if what you are asking is How can a guy cope? – is: make a decision to check with someone else first whenever your plan is to go riding in on the White Horse. I hope the result of checking will be that you will sometimes do the White Horse job. Society today is desperately in need of such. But it is by no means the wise thing to do all the time. If the final result is plainly going to be that you lose your work position, how does that help the world? That is in fact what came of your insight and empathy. The harassment situation did not get resolved by means of your courage or loyalty.
I think I hear you saying that autism has, as one of its “symptoms” the tendency to be honest. Geez, imagine that we have to call that a symptom! Well, OK, if it has the feel to it of a symptom, then the medicine for it is probably to get advice from colleagues at work as to what the acceptable procedure is.
Maybe take a piece of paper and put in one column the structure of the situation. (For that you have to be aware of company’s hierarchy, including which people are popular and therefore have the power of influence.) In the other column write the thing you want to do (help the harassed lady), and then figure out how the two columns interact. You could also identify key values – but remember that one of them should be “being able to keep my employment intact.”
I’ll betcha people are afraid of you because they can’t predict what you are going to come up with next. You may have to schmooze around a bit more to let them know you are one of the gang. From that you could then gradually develop your power base. Forging ahead with no power base is crazy.
Thanks for telling your story. I sort of have a sad story of being ostracized because I tend to act on the things I believe in. There’s a price to be paid for it, eh? I spent most of yesterday afternoon feeling sorry for myself (and I have no autism at all). But we need some happy times, too, and for that we just have to shut up occasionally!
Posted by: Mary W Maxwell, PhD, LLB | March 06, 2014 at 07:22 PM
I can't generally make conversation in "real time," especially in a group larger than two (one-on-one kind of forces the conversation to go my pace or go where I can, and I get by...I think--I can't say anyone clearly loves my company). If I ever feel brave enough to "chime in," that doesn't mean there is anything on the top of my head worth chiming in with ..."Excuse me. Just hold that thought while I got off alone and compose some really witty, or at least pertinent, personal addition to this pleasing interaction...It'll take me just 20-30 minutes to work something out and I'll come back in to share it with you all! Don't want you to think I'm rude or anything..." The conversation moves on before something usually comes to mind.
I haven't had a lot of experience with the "workplace." The only interview I ever had was rather typical (for me). I was so nervous, spent all this time trying to prepare to answer questions about myself, my experience etc, that when I was told I had the job (based on a written test performance) if I wanted it and asked if I had any questions about the job, I had nothing to say. I mean I couldn't come up with anything, couldn't even say "great, no questions, when can I start?" This wasn't how I expected things to go, so I hadn't prepared that kind of response. At least that didn't lead to a withdrawal of the job offer, but of course it didn't help. I was technically proficient at some aspects of the job to the point it might have been hard to want to replace me, but I'm pretty sure that those who especially valued interpersonal interaction felt they were making sacrifices with me, maybe everyone did.
There are some differences/disabilities that are invisible, not easily understood, often assigned to thoughtlessness, disrespect, and even when given some degree of external diagnosis, label, explanation, that doesn't automatically confer the ability to accommodate to everyone else.
Posted by: Jeannette Bishop | March 06, 2014 at 07:17 PM
That last example was sexual harassment. Period. By federal law, if the actions of that employee and his jokes about sexuality offended YOU, then he sexually harassed you. I suggest you contact an attorney experienced in sexual harassment cases. You may be eligible for back wages. I'm in California, and I'm not familiar with Illinois law, but from trainings I have attended, what happened met the federal definition of sexual harassment. Good luck.
Posted by: Sue Morgan | March 06, 2014 at 05:11 PM
I think we should get everyone together on the issue. Having one on the spectrum does not diminish the vaccine damage the other's are suffering in my house. The obesity in one, the failure to grow in another, the "new" diagnosis this year of arthritis in my soon to be 18 yr old with tachycardia, (bovine serum it "ain't" idiopathic in my book..) the asthma in another, the kawasaki, the crohn's. I thank God I didn't have a SID's, but that too should be included , this is ALL VACCINE DAMAGE. I have one six year old, NEVER vaccinated, he's my goldilocks,and he's just right!! Does it seem a coincidence that the only child out of six who developed speech, motor skills,social skills, behavior, and health normally was not vaccinated?
Posted by: barbaraj | March 06, 2014 at 05:09 PM
@cmo - I think the connection between ADHD and obesity is an imbalance of the microbiome (bad gut bugs). As I have learned from Rob Knight at the University of Colorado, obesity is associated with bad gut bugs. And a recent Cal Tech study suggested that supplementing "autistic" mice with certain probiotics lessened autistic behaviors. I'll bet we would see less ADHD behaviors if we supplemented ADHD mice with that same probiotic. The article noted that kids with ADHD tend to eat more carbs, which has long been associated by parents in the autism world with bad gut bugs. We might not see the same association between autism and obesity because some kids are just to sick, but I think the same gut bug problem is involved. So why do kids on the spectrum (including ADHD) have bad gut bugs? Maybe they didn't get enough from their mom (like C-section), or maybe they got too many antibiotics, or maybe the mercury and other toxins (maybe even viruses) in their vaccines killed the gut bugs, or maybe the glyphosate in GMO food killed the gut bugs, or maybe a bit of all of the above as well as some other things I haven't thought of. I'm certainly not saying that bad gut bugs is the cause for autism, ADHD, and obesity, but I do think they all have bad gut bugs in common. Although I'm sure there are a few very relevant differences found in all that human genome/autism susceptibility research, I think it's time to stop that line of research. If we want to continue "genetic" susceptibility research, we should look at the genetics of our microbiome.
Posted by: Betty Bona | March 06, 2014 at 11:20 AM
Thank you Tim. Your insights are very helpful for me as a parent. My son is very high functioning at this point, but continues to have some difficulty in social situations. I would like to help him with those, but don't know how, other than to continue with biomed interventions. At first I thought the social awkwardness was simply a result of slow processing speed, which I fully understand since I am slow at processing as well. But there is something more that I don't understand. When my son forms a particular understanding of a social situation, he sometimes will not change that view even when faced with great arguments to the contrary that I know he's perfectly capable of understanding as he is an A student. It is almost an OCD type of reaction. I know OCD responds well to biomed treatment, so that's all I can think of to do.
Posted by: Betty Bona | March 06, 2014 at 10:04 AM
You have no idea how grateful I am to read this post.In the last year and a half or so,since I had recovered from fairly severe autism,I had tried to get an unpaid position at one of the autism nonprofits.This includes those that have advertised on AoA.None of these have chapters in my state,New Mexico.I thought I was a lot more qualified than the very high functioning,and very public "autistics" these nonprofits put on their boards,given both my experience,and the time I have spent learning about metabolic and immune diseases that can cause autism.I naively thought that these groups were largely made up of families who were familiar with what it's like to live with a person on the spectrum every day.The reality did not really hit me until read your post here.
Nobody is interested in giving me a chance.In this time,I have gotten more than my share of emails from every one of these organizations thanking me for my interest,that were worded in a similar way to the letter you quote here.Every organization said they could not make a position for me.I now have a pretty good idea why this is.
Do these organizations also expect those who work for them to contribute money as well as time?
As parents of recovered children can tell you,recovering from autism and being neurotypical are not quite the same thing.There is a lot you retain after the recovery.Taking things literally,being unable to lie or cover up wrongdoing even to the slightest degree,are two of the big ones.I would argue those very high functioning individuals who are able to do this,may not truly be on the spectrum in the first place.We will never know how many of these very high functioning individuals are self-diagnosed.Maybe a big reason these organizations put these people on their boards,is not that they want to show autism as being unrealistically mild,but these people are the team players that a person with more severe autism can never be.Even if they are recovered.
You ignore another big point here.Even if you recover from your autism,you are often left with all of your serious medical problems.This can make you a very unreliable employee or volunteer in many people's eyes.
Posted by: Roger Kulp | March 06, 2014 at 09:40 AM
Autism & Asperger's... ADHD / Autism lite ???
Is there a reason that FOX Health uses the ...same photo... of an ADHD child as they do for a child with Autism ???
Do they have the same cause? Both have 4 to 1 boy girl ratios, both arrived at the school systems in about 1996.
24 million American children on ADHD medications with about a 13% rate in the schools. We might have a BIG problem.
http://www.foxnews.com/health/2014/03/06/childhood-adhd-tied-to-higher-risk-obesity-in-teens/
Posted by: cmo | March 06, 2014 at 08:52 AM