WHERE’S THE RESPECT – Why can’t the #Autism community get along?

I’m not going to go deep into this because it’s late but I want to just put this night there and see what your thoughts are…

This is a simple question with what I would suspect is not a simple answer.

Why can’t the Autism community get along? Why can’t we respect each others differences? Why can’t we treat each other with respect?

It’s so sad for me to see people fighting instead of working together. 



I would love to hear your thoughts on this subject?

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  


  • Janet Meliti says:

    I agree with many of the posted comments on here as well very well to the point emotiones etc.

  • Janet Meliti says:

    Somtimes I think its all the many kinds of info and perspectives and views etc that is out there on the subject alot of people have a a hard time putting aside what is important and to agree to get along even if we dont neccesarily agree etc on things.

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  • hudginsvicky says:

    I know you’ve brought up this issue before and I’ve always remained silent…what good will it do to speak my mind? Now I’m going to, if for no reason other than to get this off my chest.
    This will sound awful, but truthfully I don’t give a rip about the “community.” My son, the youngest of five, will turn 18 in a few days. He will graduate from high school in June with a satisfactory GPA, but absolutely no goals, ambition, or plans for what lies ahead. To say that I’m concerned about the future is putting it mildly. The only thing I know for sure is this. We’ll be on our own trying to figure it out, just like we have from the beginning. The main difference is this. When my son was little “they” told us we weren’t alone, that there was help available. That was a lie. Now that he’s grown, we’ve been told we’re pretty much on our own. That’s the truth. Little to no services out there for adults with autism.
    When my son was diagnosed with high-functioning autism in fourth grade, I believed there would be a system in place to address his needs, whether they be medical, psychological, or educational. I believed we would be assisted and supported through this confusing maze of mysteries and contradictions. I could not have been more wrong. I would never have imagined there were so many ways to damage and hold back a child with special needs, all under the guise of helping.
    For a long time I thought the problem was me – that I expected too much. Then I was almost convinced the problem was my son. He was too “labor intensive” teachers said. He was spoiled and it was our fault, claimed one educator. Resource specialists insisted he did not meet his goals and objectives because he was too oppositional and refused to do his work. One teacher said there wasn’t a single positive thing she could say about my troublesome child. Others concluded he had Asperger’s and was simply a bored genius – yes, that was the real problem. No expert ever suggested they might not have the knowledge or adequate training to work with kids with autism. No one ever acknowledged that the safety net was full of holes.
    My son was bullied and tormented by his fellow students and even a few teachers. He was lonely. He was sad. One night as I got him ready for bed, he told me that he wished he could be like other kids. “I know I’m different,” he whispered.
    He became so anxious he would throw up in the car on the way to school. Daily he complained of an upset stomach.
    When I took him out of one school and placed him in another I explained he would have to ride the little bus, but the new school would be a happier and kinder place. He said riding the bus was fine, “…because at least then my heart won’t hurt.” 
    I grew angry and resentful, but had no release for those feelings. I had to suck it up and keep going.
    At Kaiser, here in San Diego, one psychologist (supposedly an autism expert) tried to convince me that my son had been “over-tested” by doctors and educators, and the real problem wasn’t autism, but bipolar illness. Even though he’d been a patient of three leading psychiatrists and had been treated (unsuccessfully) with more than 30 different psychotropic drugs to manage his behavior, all to no avail, this new doctor wanted him to go back on meds! The “community” was using him as a guinea pig. 
    I wanted so badly to trust the experts, because I was so sleep-deprived and so sick with diabetes from all the stress, that I didn’t think I could take it on all by myself. Then at one IEP meeting I was told by a behavioralist that my son was “severely emotionally disturbed” and should be institutionalized for life. I knew better. I knew it in my gut. I raged. I told an entire room of educators and specialists to fuck off. They knew NOTHING about my son, even though they’d given him, at one time or another, every diagnosis in the book! 
    We were ostracized by family and friends for a thousand different reasons, but primarily because they didn’t want to be called into service. We never received, from any corner, the educational, medical, or even psychological help our son required. There hadn’t been and probably never would be any “respite.”
    It dawned on me that we legally had to go through the motions of the IEP process at school, and work with the “system” in general, but a painful truth would remain. We had to FIGHT for his life and his future, and not allow ourselves to be distracted. That has been our mission, to prepare him for adult life in a largely ignorant and uncaring world. We had to believe in him, and ourselves. 
    I only have the strength to advocate for one child – mine. The best contribution I can make to the “community” is to make sure my child can take care of himself, and not be a burden for others. As far as I’m concerned, the only people I have any responsibility to is my family. And I’m not going to apologize for that.

  • rjones22 says:

    my son has behcet’s (an autoimmune diesease) and he got the bad gene from me and his dad both. i still blame me. i think it is just “mother guilt” as I feel guilty about every bad thing that has happended to my sick son. my other son got neither bad gene thank God.

  • Jessica Wesolowski says:

    Too much stress, not enough sleep or empathy and too many varied experiences. People tend to have a comparison mentality when it comes to any child, and it seems no different within the autism community. I’ve seen people say things like “you don’t know what it’s like to deal with a non-verbal child, yours speaks” but then there’s the flip side; mine speaks but 85-95% of the time I’m translating for people who don’t understand and her meltdowns and stim behaviours are extreme even with a vocabulary, not to mention she didn’t speak a sentence until she was 3 and has other physical disabilities. I think we also have the survivalist ass kicking gene when it comes to parenting, so it’s a bit of a “you don’t know what you’re talking about” attitude that comes with the territory, not to mention every parent is defensive of their child and parenting so criticism, even constructive criticism with good intentions is taken in a hostile manner at first. It doesn’t help that we don’t know what causes it and some of us get mad at those who take pity or wish they could “fix” or “cure” our kids. Granted it’s a struggle, but I thank my lucky stars that it’s autism and not something life threatening to them like cancer or a tumor etc. Some days I wish the behaviours would stop, but that’s when I need a time out.

  • Cassandra Stone Boland says:

    I think all of us are just so devoted to defending and caring for our children that our emotions block the ability think logically, so we lash out.

  • Maria Hall says:

    Because it is made up of people, Rob….. and people are opinionated, stubborn, broken, and highly imperfect?

  • Kim Kennedy says:

    April Roga hit this one on the head for me. I would like to add that its frustrating that none of us have a SOLID reason why our children and so many others children are this way. We simply do not know and who knows if we will ever find out in our lifetime. Just that alone is frustrating. Yeah and the sleep thing…lol

  • April Roga says:

    I have not had any “fighting” on my page. Most autism parents are very supportive of others. However, I think that as autism parents, our emotions run high (and on very little sleep and mental rest). We tend to lash out easily if someone even looks at us the wrong way. Every child and every family and every way of parenting is different. If we all thought the same way and had the same views, where would we be in this world?
    I think we get so used to defending ourselves to those who are outside looking in, that it becomes survival of the fittest for us even when talking to those in our extended autism family here on social media.

  • C_Brusca says:

    AutismParentMag Lost_and_Tired now we’re talking! Stop with the Boycott talk and read that blog!

  • Carrollynn Henshaw says:

    Too much stress. Too little sleep.

  • Katy Murray says:

    Because I don’t think people understand there is more than one cause of autism: genetic and environmental. Maybe even the combination. People aren’t so good at empathy, especially when dealing with their own grief of their autism situation. For example, people want to discount the immunization theory because it hasn’t been proven to correlate, but I believe there is a possibility that maybe there is a genetic component that interacts with the immunization theory. And also, I believe autism appears in different ways, but it is such a blanket diagnosis. My son’s autism wasn’t diagnosed until he was in middle school…I just thought everything that was going on was to be blamed on his genetic syndrome. IT took a meeting with a special needs educational consultant to open my eyes that many of my son’s behaviors qualified him for the diagnosis…and since then, many kids with his syndrome have been diagnosed as well. Why wouldn’t the genetic component be embraced? Because then it is the parents’ fault and they can’t blame the immunization or whatever or whoever else they want to blame. It is all about pain and acceptance and blame. My son got a mutated gene from me and his dad…autosomal recessive. There is no denying where he got it… But a set of parents looking at a beautiful healthy child who suddenly changes and regresses with no explanation…how are they going to be able to blame themselves? And then there is Jenni McCarthy…and what has she done for us lately? So now I will go and actually read your post, lol. I have deeper thoughts on this one, but my fingers are tired, and I want to read your post:)

  • buxom9412 says:

    Lost_and_Tired I am staying out of the battle I have enough with two at home that fight with me or themselves