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The Hidden Autism Community

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The Hidden Autism Community

There’s a group within the greater autism community that most people don’t see. They hide away, in closed Facebook groups, alienated from the one community where they should be able to find support and commonality.

 

They have been ostracized, ridiculed, and accused of being terrible parents. If they try and tell their stories, they are ganged up on by scores of hostile people that call themselves advocates.

 

Some might say they are silenced because to acknowledge their family’s “brand” of autism would undermine advocacy efforts aimed at presuming competence. I’ve not said that, but I know others who have.

 

This is a group that lives with “severe” or “extreme” challenges; aggression, self-injurious behavior, intensive behavioral challenges. Their lives are almost unmanageable. Their children (including adult children) require so much care, that these families struggle to make it through each day. I happened upon their group, which consists of almost 400 people. That may not seem like a huge number, but keep in mind that is just one group. There are likely many more out there.

 

They have been kind enough to give me permission to write about them; to use their words (anonymously), to allow people to understand their frustration and fear, to hear their pleas for help. They have also encouraged me to allow all comments through, to allow (respectful) dialogue. (And unlike some pages, I will be moderating for respectfulness.)

 

I’ve spent some time culling comments from group dialogues. They are as follows:

 

“I know this kills you inside…ripping your heart. It does for me with Holly. I feel so useless because I don’t know what’s wrong and I want/need to help her but I can’t. It kills me to know our children are in pain and suffering and there’s not a damn thing we can do! Xoxo.”

“This makes me want to cry…I almost killed myself and my son, then one day I got the call that he was going to a treatment facility in (anonymous city, state). That call saved my life! I fought for over a year…it wasn’t until a catastrophe happened that CMH finally opened their eyes to our situation. One of my BFFs did try to kill herself and her daughter. Please, anyone else reading this who is overwhelmed…keep fighting for help!! It is possible to get it, just not easy!”

 

“As if things around here wasn’t (sic) stressful enough with Stacey beating herself and pulling herself bald this week, we got a visit from CPS today. 1 of the neighbors accused us of abuse because of all the screaming she is doing. Of course CPS went to the school and looked at her talked to all the teachers and aides and no charges will be filed based on no findings. I told them come by any day of the week, she will still be Autism (sic) and I still won’t have beat her but can’t speak for her beating us. Done venting.”

 

 

“So strange…I just went into my not feeling mode. I care deeply, but my body feels like it does during Jeff’s rages. Just resigned and dissociated. I hate that we all go thru this. I hate that our kids must be suffering so deeply to respond this way. What did they ever do to deserve this? They are kids! It’s so unfair to all of us. Thank you for sharing. People just can’t imagine.”

 

“I am so sorry, I’ve been exactly there – with Jacob Prozac worked better than Zoloft and his aggressions and hyper-OCD have mitigated somewhat. I called my husband home many days & called 911 two or three times, only to hear them tell me there was nothing they can do…realizing there really is no help is so frightening. Having to hide from your child is a certain kind of horror most humans will never know or understand. Love to you.”

 

“We took Mike for a drive this evening, which is usually his favorite thing to do…30 minutes in he had a massive meltdown…head banging the car window and hitting us. I had to get in the backseat with him to keep him from breaking the window. Got home about 30 minutes and the headbanging continued…walls, cabinets…gave him his nighttime meds and he just finally calmed down. Too tired for words.”

 

“Why me? Why my daughter? I’m so tired. 😦  “

 

“Feeling guilty that I can’t give all that my other kids need from me. 😦  “

 

“I am sinking. I’m sinking and drowning in autism and I can’t breathe. I cannot shake this feeling of hopelessness. I pray constantly for a miracle, for Matthew to get better, for us to be able to be a normal family, as much as possible. And the darkness just envelopes me again. There has to be hope. Please let there be hope.”

 

And this last comment, by Adrienne Jones, who blogs at No Points for Style, is a response to what some advocates in the community have said about simply calling 911 if you think you are in danger:

 

“When they shout about JUST CALL 911 or GO TO THE ER, I know they have a fundamental misunderstanding about how those things work (and assume the caregivers didn’t do that, when in fact, usually they’ve done it multiple times.) Usually you’re back home with minimal (or no) follow-up somewhere between 4 hours and 3 days. No help, new bills, and less hope than ever. You call the cops, maybe they traumatized or (in Albuquerque) kill your kid. You put your kid in RTC, maybe they treat your kid badly, or even hurt them. I’m pretty active politically, working to get more services in NM, better training for cops, more programs in schools, and it’s like dragging a truck with your teeth. Nobody gives a shit. Our governor is caregiver of a disabled sister, and she still doesn’t get it. She has the money to pay for full-time care, so what the hell does she know about life in the trenches? She’s just trashing services in the name of fiscal responsibility and letting people die. It puts me in a blind rage.”

 

This post isn’t about blame. It’s not about shaming autistic people. It’s about being honest about how big this spectrum really is, and how severely affected some individuals and families are by autism. This is reality for these families. This is their daily struggle. If we keep ignoring them because we don’t like the words they use, or because we don’t want to think of autism as anything other than shiny and happy, then we are leaving these people to fall.

 

You would never ignore your child’s needs because you didn’t like they way they asked for something. Why would you ignore a huge group in the community that is screaming loud and clear about there not being appropriate short-term and long-term emergency services available to families?

 

These families, every one of them, have the same value, worth, and dignity as every autistic person. If the family is drowning, then so is their child. We need a community that welcomes these families, and reaches out to them.

 

But just like appropriate services, we don’t have that.

 

But their voices will still be heard. There will always be someone out there willing to amplify them in the hope that it will bring about change. Why not you?

 

 

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About Flannery

Kid, husband, dogs, my mother, full-time job, maximum stress, minimal relaxation...sooner or later I had to vent. AND we moved from California to Texas. I could start a whole other blog about that.

112 responses »

  1. I cannot tell you how important this blog post is, the quotes, the raw emotion. You know. I know. So many people we know, know. It’s time now that the general public know. The only way we can save these families is to rally around them and embrace them – not shush them and try to ostracize them. Only by shedding light on the tragedies – yes, I said tragedies, for there are some families who are tragically effected, horrifically burdened, and desperately in need of help – that we can even hope to begin seeing change.

    You are truly a powerful voice for our community. And I thank you/

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  2. Thank you so much for writing this ❤

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  3. I just want to hug them all. Good and much needed post.

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  4. I get this. I so totally get this. Twitter has been a lifesaver for me, but sometimes I get to the point where I can’t read tweets because I’m getting shamed for suggesting that autism isn’t a blessing or just a different point of view. I have numerous holes in my drywall that I have no idea how to pay for, I’ve taken my son to the ER five times this year because he busted his head open, I am regularly kicked and hit. But some would call me a terrible parent because if there was a cure for autism I would sign my kids right up.

    I normally don’t shill for myself on someone else’s blog, but I’ve written a couple of pertinent essays on my own blog: Acceptance: http://seanmacnair.blogspot.com/2014/04/acceptance.html
    and the reason I don’t support a boycott of Autism Speaks: http://seanmacnair.blogspot.com/2014/01/boycottautismspeaks.html

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    • I totally get it, as the grandmother of 4 boys (and 1 girl) with the oldest two boys being on the spectrum I totally get it. Every day is a new adventure in seeing how far my patience can go. The younger of the two didn’t get diagnosed until 2/3rd grade and we didn’t even realize cause he is a bright boy but always seems to be constantly confused and has a very hard time with behavioral and social skills. My oldest (who is now 15) was diagnosed at age 9. He is tall handsome and you would think he is normal until he trys to talk, and yes he put his head through a window once (with us standing there) then looked at us as though to say “oh, is that what happens”. Up until recently we really dealt with the aggression. It’s still there but he spends a lot of time in his room with the kindle and that helps with keeping him stable.
      You will never hear me say that Autism is a blessing or that my children are special just the way they are. I would give anything for a cure . . .to have my grandkids not have to deal with this, I see the frustration and isolation they have to endure and it makes me angry and sad. I’m sorry as much of a pandemic as this is becoming I have to ask WHY? I believe someone is responsible, there is something going into our systems or our children’s systems that has to be bringing this on and I for one want to know what it is.
      Autism is not a blessing and I’m tired of hearing that it is. An
      d we do need help from the outside. I am afraid one of my kids is going to get shot because they don’t understand what to do and when to do it.

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      • I’m finding a community of likeminded people here. No. Autism is not a blessing. May God help and rescue us all.

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  5. I’ve written this post in my head 6 times and it didn’t have a tenth of the raw emotion and substance that your post has. Sharing. Beautiful. I am BLESSED to be a part of that facebook group. Those women are amazing. I also thank my lucky stars each day that (as far as I can tell) my twins are the highest functioning kids of parents in that group. I’ve not (yet) had a broken bone or been hospitalized— my kids are young and part of the reason I’m in that group is to learn what I can do NOW before my kids are stronger and larger than I.

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    • I needed and loved that group until you joined. My daughter has been known to have 400 SIB’s per day, ticked by professionals. We had local law enforcement try to press criminal charges on her for the scars she’s left on my body. When you joined the group…after your comments about we were scaring you by telling our stories because your kids were love bugs that would never hurt a fly and then your post about how we should stop letting our kids watch violent movies and then they wouldn’t be so aggressive pushed me over the edge. I was and still am dumbfounded that someone who joined a group about extreme love could be sooooooo ignorant. I left a group I needed because of your ignorance. I hope you’re happy. I hope you’re all happy.

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      • Kim who are you addressing your post too? It’s terrible you left, but did you attempt to discuss this in the group and see if perhaps that person would leave since they didn’t need the level of support? I would try to do so because you do need it and it assists you as well as others for you to be there. I am sorry this happened to you. No one should feel that way.

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      • Go back! Don’t let some idiot run you off!

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  6. Pingback: THIS is the Awareness We Need For Autism Awareness Month | sortedmegablocks

  7. Thank you!! This is so important. These people deserve to be heard; not shamed.

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  8. Wow. Those quotes are powerful. I could feel my anxiety rising as I read each one. I can’t imagine living every day of my life like that. Thank you for not being afraid to share the extremes…I have an autistic son, and I would never have thought that those things were possible…Sending supportive thoughts their way.

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  9. This. I get so many emails and fb messages and posts from very well meaning friends, attaching some new article about a genius Autistic child and they all say “Look what your son will be able to do one day!” Or “There is hope!” Little do they know how their messages have the exact opposite effect that they intend. It just rubs in my face the fact that most people are still clueless about the spectrum, including some other ASD parents (because they are blessed with very high-functioning kids), and serves as a reminder of what my son will not ever be able to do. It makes me feel like I can’t complain about it, because people act like I’m limiting my child’s potential when I’m really just being realistic. I never see this side on fb, everyone acts like ASD is the best thing that happened to their family and to suggest otherwise makes me feel like I’m a selfish, unloving parent. I so get the feeling of being overwhelmed. Of worrying what happens the day he is bigger and stronger than I am. My husband and I have talked before about how we would almost consider giving him something to stunt his growth so that can’t happen. I mean things you never in your life thought you as a parent would even think, much less voice. I appreciate the honesty of this post. It feels like relief. There are other people who understand and are honest enough to put it out there.

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    • I too agree that there is too much “tamping down” that goes on on Facebook, when I post what is a realistic assessment of my son’s probability of living an independent life one day. I feel like punching people who tell me to never give up, because our children are capable of so much, yada, yada, yada. I choose to be realistic, and will be happily surprised and grateful, if he exceeds my expectations. I’m doing everything I can to make sure that he has the chance to learn how to read, write, speak, make himself lunch, brush his own teeth, bag groceries, what have you. I am leaving no stone unturned.

      But it is my right, goddammit, to speak my truth, without having to do a politically correct dance to sooth the egos of high functioning autistics and advocates, whose daily lives and personal histories do not parallel the everyday facts of my family’s life. I don’t speak for you and I never asked you to speak for me or for my son. Autism is not a gift for my family. It is a burden. And if I could take it out of my son, I would. Because his life would be much better without it. And if that truth hurts for someone else–whose version of autism is less extreme, and just a relatively pleasant walk down a quirky path of social difficulties and hyperfocused interests–so be it. My version involves lots of poop, pain, financial debt, endless worry, grief, and battles with the school system.

      Please don’t tell me what autism is. Believe me, I know.

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    • You have articulated yourself in a way that I could never have and I thank you for it. I feel exactly the same way. I told almost no one how bad things really are for us because I just don’t think people believe me. The ones that do have seen first hand the ugly side of my son’s autism. My husband and I laid in bed last night listening to my son scream for 2 hours straight. There is nothing we can do. We are lucky, my son who is 16, is small for his age, only 5’3 and 130 lbs. God help us if he was bigger. I hate autism so much and it is not a goddamn blessing!!!!

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    • It is so annoying when people post things on facebook about Temple Grandin or an autistic girl typing, tagging me and asking if I’ve seen it. Believe me, I’ve seen ALL of it–and until I heard of the parasite protocol for autism, there was nothing new.

      It makes me roll my eyes partly because it is an attempt to make autism look “cool” (“Oh wow, look! People with autism can ‘find their voices’ through typing!”) which it is not. And that is so far removed from what has worked with my sister that…well, they obviously have no CLUE. She gets agitated when presented with a computer. Not really her thing…sigh…

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  10. Wow, what a powerful post, thank you for this….

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  11. Don’t think that just because a child is high or low functioning that autism is easier or harder. My child is a high functioning 18 year old who through his lifetime has threatened to kill us, beaten his brothers, and is frequently defiant. I never thought I would allow my child to go to a residential treatment facility, but it was one of the best things we did for our whole family; and we had to do it twice. Now he is an adult in the eyes of the law. Now what? I understand the hopelessness, the lack of understanding and support, the isolation – and I know it could be much worse. My heart is with you who are struggling. My heart is with the parents who can’t handle one more thing. My heart is with those who have given up. My heart hurts with and for you.

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    • I hear you. (and on the flip side There are those considered severe on the spectrum who do not have extreme behaviors/issues)

      This group includes children across the spectrum who have extreme behaviors. While many are on the severe end, this group has welcomed me and loved my son who has moderate autism but severe behaviors (he has one to two staff with him always and is in a special education school district)

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    • my 10 years old is Apsergar but during meldowens has hit kick and try bitr us to be a runner, he also has ADHD,OCD<ANXIETY and ODD<SDR. but he does very well at school, regular classes makes A' and b., He bevers want to go anywhere loves his DS and WII and WIU and reading. does like sportds kids loves him but does have many true friends.

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  12. While Flannery did an excellent job of writing this and it is an excellent representation of our page, it barely scratches the surface. It would be impossible to write a blog detailing all of the high’s but mostly low’s that we go through. Autism isn’t just a bad moment, quirk or day for us. It is an entire lifestyle. There are no vacations, no money, little support and days of exhaustion, mental anguish. There are days we are not sure are friends are still with us and we ponder what awful event could have taken place. We are beaten, abused and at our wits end. To many, it is a pity party website (I have had people leave because “They can’t’ take our whining.”) To many of us it is our only outlet for acceptance, sadly. My guess is probably 90% of us will eventually need to have our children placed at some point in their life. Most are very low functioning and we will die giving up our children to the State. It is a sad reality for us.

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    • An advocate made reference to this post on their page and remarked that it was a group where people could talk about wanting to kill their child. How would you respond to that statement?

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      • I’d say it’s reality. We wouldn’t endorse it nor condone it. But sometimes when you haven’t slept literally for days and you have cleaned smeared feces all over your wall and you can’t pay your bills and you, yourself are sick and your child will not give you a moments peace, or the school called and said your child can’t attend there anymore, or you have simply lost the will to live, you tend to feel that way sometimes. I myself, am in intensive psychotherapy to help deal with emotions like this. This IS the place where you want to be if you feel that way because there isn’t one person on the page that isn’t willing to listen to your story and help you through it and talk you out of it. It is a safe place.

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        • It’s also a place where you aren’t judged. You are understood.

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          • Hi, I have 17 yr old triplet boys and 2 have autism. One is moderate and one is nonverbal and severe and we deal with agression constantly. How do you join the Facebook group, I would really like to as this blog piece totally relates to my life with one attacking the other and us. Thanks.

          • I am so, so glad that you have a place to go for support. I know that I have been in that dark place before, and fortunately came through. And I know that people who say “I understand how someone could kill their child” are condemned. But I understand. And I’m sorry. And I wish (all of you) as much peace as you can find.

        • Thank you for your candid response. I hope it helps people understand.

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      • Maybe if more people could talk about those really scary feelings then fewer people would follow through with the action. It’s not like there are many places safe enough to even admit having such feelings, let alone work through them to get stronger.

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      • I’d say that is an uneducated comment. I try to be sensitive to the perspective of these types of advocates, but that kind of comment said in that manner is another example of why people don’t speak up and seek support. It is an attempt to deny our reality and shame us.

        I will never understand how people can’t understand that I love my son above all others and have willingly given my life to him. But at the same time the severe symptoms he suffers have been so incredible and almost too hard to explain.

        The support members on this site have encouraged and supported people to stop further tragedies.

        It’s pure sensationalism (or maybe attention seeking?) to suggest anyone would encourage killing or suicide.

        If I felt my son or other members’ children would be safe from such a person, I’d invite them to my home and love for them to manage these behaviors for a week or two.

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  13. So many times I have looked for just one reason to keep going. So many things beyond our control, so much pain and sorrow and helplessness, and to be shunned, blamed and accused of not loving our kids because we HATE autism. Ostracized, isolated, shunned, beaten, reduced to begging, my own health and financial situation in the gutter. I didn’t ask for this, I could never have planned for this. Faith only goes so far. Sinking deeper and deeper into a hole, almost hoping for the dam to break to put an end once and for all to the pain. Put yourself in our shoes, please for one day imagine this world with no end in sight. Autism is NOT rainbows and bubbles and genius and magic. It is all encompassing,cruel relentless, mind boggling and it is killing me and my child, we are dying more and more every day as aggresion gets more intense, ignorance is rampant, finances are dwindling, judgement is brutal and the only way out looks more and more appealing everyday.

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  14. Thank you for posting this.

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  15. What is the name of the group? I am living this every day! Thank you for bringing awareness!!

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  16. I so commend you for writing this. My daughter is 10 and weighs 160lbs. For many years we struggled with her aggression and poop and phone calls from the school. We’ve gone the cps route and her injuring herself and injuring the animals. I personally am tired of hearing someone call her high functioning just because she can talk and walk. When you are constantly running behind them making sure they wiped or aren’t tormenting the animals or reminding them to shower for the umteenth time or look before crossing the road or not telling strangers your life story. That is not hfa. It is not all rainbows and unicorns! Fortunately our situation has improved slightly so she isn’t nearly as aggressive. That doesn’t mean that things are easy peasy now. There are not many supports available for people. We are fortunate to receive some but only because we’re a one income family. If I went back to work we would lose it all. And family? Please….they’re clueless and frightened so they just stay away because it’s easier to pretend she doesn’t exist… Autism is a not-so-fun place to be most days. Most people don’t get it. The mental exhaustion alone, on “good days” is enough to make me want to drink myself into a stupor… I am glad this group is here for you all where you can all get support from each other when you need it 🙂 That was my saving grace when she first got diagnosed. My support group has helped me with so much. I thank you for sharing these stories in the hopes that others catch a glimpse into how it really is….

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    • Your animals deserve to NOT be abused by your child — like kids, they are vulnerable creatures 100% dependent on an adult human for food/shelter/care. If an animal bites your kid (and even sweetest pup on the planet will, the 3456th time a kid pokes them), it will be the ANIMAL’s fault and it may be put down. If the bite breaks the skin and a doctor or teacher or other mandated reporter sees it, they will be required to alert CPS.

      Complaining that your exhausted and your kid on the spectrum is aggressive and terribly difficult is presumably normal — but there’s a huge difference between venting and telling folks you are suicidal/homicidal. Research on mental health suggests that folks who do the latter are at genuine risk for harming themselves or others. And, well, people worry. Legitimately so. It’s great that your support group provides you with, well, support… but it also might just be “normalizing” what you’re experiencing. (Alcoholics tend to eventually hang out with ONLY other alcoholics, since it “normalizes” their excessive drinking and the way it damages their lives. Because the non-alcoholics of the world insist on telling the alcoholic that what they’re doing is really, really bad/destructive/will be the end of them. Support from ONLY the parents whose kids on the spectrum are just as difficult/aggressive as yours isolates you from the presumably large group of parents of autistic kids who managed to more or less conquer their aggression).

      Family being clueless and staying away? Yes, it could be because they’re discriminating against your kid… but it could also be because:
      1) your kid has hurt their kid one too many times / damaged too much of their stuff / is straight-up dangerous to be around / harmed their pets. Or they have pets they would prefer your kid didn’t assault.
      2) you are unable/unwillng to keep their kid or their property from being harmed by your precious little dumpling
      3) you’ve spent the past 10 years complaining about your kid and speaking of nothing, absolutely nothing else.
      4) you made a million demands on your friends/family so your girl could attend an even, they moved heaven and earth to make it possible and you cancelled at the last minute. 8 times in a row.
      5) you haven’t returned a phonecall, sent a birthday card or reciprocated an invitation is 5+ years. You expect everybody to support you, do stuff for you, get NOTHING at all in return because you’ve just take-take-taken and then TAKEN some more. You’ve failed to many an effort, ANY effort at all, to hold up your end of the social contract.
      6) if your parents are elderly, you’ve done absolutely nothing to help them — 100% of the burden falls on your siblings. Who, with good reason, are resentful.

      The folks isolated from their families and friends? people that have loved them for decades and have nothing to gain by being mean to you? All of them have distanced themselves, not just one or two (which is normal, since sometimes folks drift apart)?? You really, really ought to take a look at your own damn BEHAVIOR. If everybody’s distancing themselves and YOU are the only common denominator… well, you might wanna think some more about that.

      The world does not revolve around your and your difficult kid. There’s give and take. And if everybody’s distancing themselves from you, odds are it’s because you’ve TAKEN a ton and given absolutely nothing in return!

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      • A lot of presumptions have been made here. Your comment is powerful in that it tells me a great deal about you as a person, like a blinking, neon warning sign. I will leave it to others to respond to you, if they find it worth their time.

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        • Jennie Ladew-Duncan

          The person may be partially right, but they have NO clue and haven’t lived this life. I say put the person on extinction.
          Jennie

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      • Wow. Seems you have some specific issues with a family member or friend?. But, This is exactly the problem. i wish you could really get past the chip on your shoulder and hear what is being said here but seems you have all the answers, and I’ve learned that it’s just not worth trying to share a more balanced perspective in such a case.

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      • WOw!!! Im pretty sure these parent s are not constanly complaining !!! They are all emotionally and physically drained. All we asked for sometimes is a little understanding and maybe a night out to regroup. As far as elderly parents, well my family is dealing with that now and I know they do not expect me to help!!! WTF????
        Dont you think we would help if we could . You lady are a bitch!!

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  17. Wow, I can not tell you how many times I have felt every emotion in these stories. And not having anyone to say these things to is so hard. I wish thing were different for us.

    How do I follow this blog?

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  18. I work at an intense ABA program for this population of Autism. My classroom is middle-school aged, all non-verbal, and all of them engage in aggressive and/or self-injurious behavior. Kids go here when their district has nothing appropriate or safe for them to be. Some days are very stressful and you have reached your limit. I cannot imagine what these families must go through. We have the man power and resources to keep the kids safe and interrupt behavior. Now imagine having to do it alone, with limited resources and help, maybe even with other kids in the house…..everyday. Never judge these families, they have to make the best of a very difficult situation.

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  19. Thank you so much for writing this, this has been my life for the past 10 years now, and while my oldest son is making progress, it is still a daily battle to keep my younger children safe, we can’t keep pets because they will be mistreated and people who say things like “just keep a closer eye on him” have no idea what it is to live with severe autism on a daily basis.

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  20. I’m not where these parents are. Although I have a child with autism, he is not violent, so this is not my daily experience with autism. My frustrations revolve around, what do we do so that my son is taken care of when we’re gone?

    That said, the first thought that went through my head when I read this was, “And people wonder why Kelli Stapleton tried to kill herself and her daughter.” I personally believe that unless you have been there, you cannot understand the desperation, hopelessness, and fear that so many autism parents live with from day to day. We are fortunate in that our son isn’t violent. I can’t begin to imagine what the parents written about here must go through from day to day.

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  21. Thanks for posting. I am one that belongs to one of these types of groups. It does help to vent to others and to hear what others are struggling through. It lets us know that we are not alone. It gives us resources and ideas for strategies. I love my private groups. Some days they are what gets me through.

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  22. I am the mother of a severely autistic young man (very low verbal ability) who also exhibits severe aggressive behavior. We have found cannabis (medical marijuana) to be extremely helpful and beneficial for our son. The difference in him has been almost miraculous. We have been utilizing this medicine for 4 years. We slowly removed all pharmaceutical medication during the first year, and he continued to do well. He consumes one small cookie each morning and sometimes another half a cookie in the afternoon. This has truly been the best thing we have ever done for him, and we have done a lot. I want to urge each of you to try this for your loved one with autism. Just do your own research by googling the words autism & marijuana. There is evidence and research done in other countries that cannabis is a safe medication that works very well calming the nervous system. Please don’t be afraid to try this for your child/adult. It truly saved my sons quality of life and our families well-being too. The results can be seen immediately, within 20 minutes of consuming the edible. I strongly believe it can help many people with autism. If anyone has any questions, just reply to this post. I just want to add that I am college educated, a PTA mom, and well respected in my community. I know that cannabis is medicine that my sons body needs for him to be the best he can be.

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    • For the record, I do not officially endorse medical marijuana for children. That said, I urge you to do your own research and speak with your physicians. There may come a day very soon where this is more readily available, but until then, my public response is to urge caution and careful consideration. 😉

      Reply
      • Thank you for allowing my post about medical marijuana. I understand your reservation about endorsing this medication. That being said, children/adults with severe autism are in desperate need of medication that actually does what it is supposed to do. Pharmaceuticals did not do much to curb my sons mood swings, high anxiety, OCD, and aggression. Cannabis works! It is a plant that had been utilized for 1000 years until it was prohibited in the 1930s. Just research for yourself. I live in a state where it is not legal, but that did not stop us from trying this for our son. Thank God we did, because it has helped tremendously. I just have to share what I have learned over the past four years. All persons with autism deserve the right to try this to see if it can help them too. The great thing is that you will see the results the first day. At that point, you can decide whether to continue or not. I just want you all to know that I wish for each caregiver who is reading this the very best, and the best for their loved one, because I know how hard it is.

        Reply
      • There are actually quite a few parents who’ve had great success with giving their spectrum kids medicinal marijuana in states where it is legal — here’s a link to a series of articles that one mom wrote about pot’s impact on her moderate-to-severely autistic 9 year old son, which she gave him via pot oil baked into cookies:

        http://living.msn.com/life-inspired/why-i-give-my-9-year-old-pot

        Spoiler: It worked great. Of course, it didn’t instantly cure the autism, but it almost overnight stopped him from eating thing that aren’t food (shirts, quilts, rocks in the garden, etc) which made:

        1) pooping less unpleasant, so he was finally potty trained at 9 years old
        2) the kid less aggressive (since he was no longer in so much pain), dropping from an average of 30-50 aggressions per day at his special school (for years and years on end) to days, even weeks, of no aggressions at all at school
        3) stop trying to scratch his face off (since he was no longer in so much pain), i.e. significant drop in SIB!
        4) the kid willing to eat foods he hadn’t touched in 5+ years.

        Hopefully someone will do some rigorous scientific research into pot’s impact on kids on the spectrum — because there’s enough anecdotal evidence to suggest it can help.

        Reply
    • Debbie, I write about issues concerning the severe end of the autism spectrum (which I know very well since my son Jonah, 15, has struggled with extremely aggressive and self-injurious behaviors). I write for Slate, and my book “Each Day I Like It Better: Autism, ECT, and the Treatment of Our Most Impaired Children,” was just published last month. I have been interested for a while in writing about medical marijuana in this population, and have had a hard time finding parents willing to be interviewed — I have a good friend who has had a lot of success using it for her son, but it’s illegal in our state and she is terrified of being caught. Would you consider sharing your story with me? I agree with you that this is an important issue for the autism community.

      Reply
  23. This made me cry! These kids are just like my boys….. I have the most severe case of any of our other groups of parents.i always have to keep some things in.. thank you for sharing!

    Reply
  24. Thank you for this post. While I do not have children who are on the spectrum, I teach HS students that are severe/profound ASD. I do everything in my power to make my students lives better (even though this is my first year teaching). What my kids need and what kids who are higher functioning are two totally different things. My admin do not want to see/hear this. They want to blame me for the districts failure to provide services for students. Bless all of you because I truly don’t know how you do it every day and every night.

    Reply
  25. This was my life with my son. He is very low functioning, non verbal, violent and self abusive. Only others who are living it can understand. He is now in residential placement and it has probably saved our lives. It was the hardest thing I’ve ever done and it still breaks my heart but he is happier and more settled and getting help and I hope to learn to sleep again.

    Reply
  26. Thank you.

    Thank you.

    Thank you.

    As the parent of a child with autism, epilepsy, cerebral palsy, and multiple other medical issues…I am grateful that awareness of just how hard it is is being raised. I don’t want pity. I just want people to stop saying, “God only gives you what you can handle.” I want REAL resources and help for my child. I’ve been on that bridge, looking over the edge, wondering if six feet under was really all that far down. If it wouldn’t be better.

    So thank you.

    Reply
  27. Thank you for sharing these stories. I have a 2 yr old who has autism. He bangs his head on walls often and at times will hurt his father or me as we try to calm him down. He is getting behavioral therapy now to try to help him and I only hope that it will help him better communicate with us since he only says mamma and dadda and he babbles a lot though he at times will take our hand and guide us to what he wants. I do not know what effect autism will have for us in the future and that scares me the most. My heart breaks for the families that struggle with their children every day.

    Reply
    • Violet, one theory is that this self-injury is because the child is already in a lot of pain though he can’t communicate; something makes him bang his head to drive away the pain already there. Have you considered gut issues?

      My sister has (I’d say severe) autism. My parents started her on the GFCF diet as an adult, with tremendous improvement…though it plateaued…now they are doing Kerri Rivera’s Healing the Symptoms Known As Autism, which begins with the diet but has much more. I’d love to talk more with you: katiecrystal23@yahoo.com

      Reply
  28. In high school I used to sit for a family with 2 young girls with profound autism. They were 9 and 11 years old. Neither was verbal and both were physically aggressive. Even at that young age they were hard to contain, fearful they could hurt me or themselves at times. When the parents came home after the first time I watched them they asked me if I would ever come back again. I told them I absolutely would. Their mother cried, she said it had been so long since she and her husband had been out together. I contined to watch the girls over the next year and it was challenging, but rewarding I had so much respect for the family and their dynamic definitely changed my views on family, love and expectations. I lost touch with the family, but nearly 25 years later they are still on my mind. Keep fighting for your children, keep fighting for yourselves. Don’t hide, you never know where help might come from. Hoping for a cure and wishing you all peace.

    Reply
  29. My heart is breaking for all of you…I don’t have anyone in the spectrum but have an interest of understanding. This is a crisis and numbers keep going up every year…when is our government going to start putting big money into research. Prayers to all of you!

    Reply
  30. Flannery, thank you, thank you, for this post. My son is 22. He is aggressive and can be violent, but not to the extent that the comments in this post reflect — yet I have experienced the dark thoughts these beautiful, honest people admit to, myself. The desperation autism causes cannot be truly understood unless it is lived through, simple as that. In relation to these stories I am one of the “lucky ones” — my son has lived residentially for over six years, and while it hurts deeply to say so, I believe that probably saved my life. But rarely do I consider myself “lucky” in relation to autism. I would erase it from my son’s life in a heartbeat. I will mourn forever all that it has cost him, and I grieve the relationship I should have had with him, as he’s lived 1 1/2 hours from home since he was 15. How dare anyone question our love for our children if we admit to wishing they did not have this awful disorder? I defy anyone to live in the shoes of the courageous parents whose stories you’ve shared here for just one day, and say otherwise. Thank you for posting this. As a new blogger, you are showing me how to do it.

    Reply
  31. Thank you for bringing this community of caregivers to light. I’m one of those parents, but not involved in any group., we managed to go it alone for the most part. We have two children with autism who now both reside in group homes. Some will never understand how exhausting it is for parents of kids severe kids with autism and the sad part is we need to shelter ourselves because there are some who will never want or try to understand.

    The spectrum often leaves us from the severest case to the most mild case, alone isolated and confused because each person with autism is so unique and each experience we have with them is so different.

    Reply
  32. Thanks for writing.
    This is sad and hitting right in the center.
    My son is four and severely autistic.
    I can see so many of these things happening as he grows older and stronger.
    And I’m already fighting trying to get him into a school this coming winter.

    Reply
  33. I saw my life in so many of those comments. It’s heartbreaking. Thank you for giving an ear to the desperation and overwhelming sadness that some of us face. Not all kids are “high-functioning”. I actually have a knee- jerk/gag type reaction to that phrase…
    Anyway, thank you!

    Reply
  34. We’ve needed to hear these voices for a very long time imo. Thanks for being the conduit.
    I hope you’re changing names too. And locations. Ages too if appropriate.
    I read a note on FB within the last few days concerning a mother who did kill her son and herself: inadequate services were among the reasons cited. 16 year old boy, very large for his age, and mother in Canada. If you know who this is, and if there is a place that the family requested memorials be sent, I hope you’ll share that information. It’s a pitifully small and definitely belated thing to do … but I feel the need to convey my thoughts to that mother and her surviving family. “I have heard of your situation and your action. I wouldn’t in a million years consider judging you. But I would like to send a small contribution to whatever agency/research facility, church, maybe even the area where you and your son walked everyday to calm him, in memory of the two of you and the sister/aunt who often walked with you and who is now mourning her losses.”
    And I will remind people of your deaths as cutbacks in services are considered, in Canada, in the US, wherever I happen to be.
    The two of you will be remembered.
    Maybe there should be a new organization formed to collect memorials for those who did take their lives … sort of a starter fund to raise funds specifically for those who are truly desperate and have no hope, no where to turn, only desperation.
    Thanks again for this providing visibility to this portion of the autism spectrum. And best wishes with your blog. Sue

    Reply
  35. Thanks for posting this. Being a high functioning autistic individual myself, with a moderate functioning autistic son, I have to agree that the parents dealing with severe autism are treated unfairly. Being on the spectrum, I can certainly see where the advocates of the “presume competence” movement are coming from, but at the same time, it’s obvious to me that they do not have a clue when it comes to parenting a child with severe autism. I don’t even have a clue, really, but my son is challenged enough for me to at least be able to see that. I think it’s one of those things where it’s nearly impossible to understand if you haven’t lived it, but I think that of all people, the people in the autism community should at least be trying to. I’ve seen autistic individuals bully the parents of severely affected children out of support groups, and it isn’t right. We should all be trying to understand each others experiences so that we can better support each other.

    Reply
    • Aaryk Noctivagus

      Hi…

      I have been thinking of posting, but because of some comments hesitated… but since you posted, Donna… I feel I can reply to your post.

      I am a High Functioning Autistic person also – I didn’t start vocally communicating until I was around 5.5 years old, and wet myself almost daily until I was around 7 or 8 – my mother refused to send a child of her’s to school in nappies (This was during the 1970s). I have long been sickened by the ‘Autism is Genius’ rot… rot even for people in the so-called higher end of the Spectrum like me. I believe it is incredibly damaging with its ‘Einstein Lists’ (Einstein was *not* Autistic), and lists diagnosing fictional character rubbish – neither is in any way shape of form raising Autism awareness or understanding… neither in my opinion is lighting anything up blue. I am actually one of those who might have been remotely pointed out as the case in point by the ‘Autism is Genius’ brigade… if I had celebrity value, which I don’t. Supposedly talented and very high IQ… and yet, in life, I am absolutely nowhere in *larger society* and with very little in the way of prospects in a society I cannot navigate and which hurts me.

      I am fortunate to be married though, to a lady from a different society. Married for 26 years this coming June. I also sit as a Service User Volunteer on the local county’s Autistic Spectrum Condition Partnership Board. I have two children who are also Autistic, both ‘High Functioning’ (how I have grown to hate that term).

      My youngest, my son, lives with us. In some ways he is slightly milder affected than me and in other ways more severe.

      My eldest, my daughter, lives at a residential school now. Even with my ‘inside track’, we couldn’t solve her severe behavioural difficulties. She is ‘High Functioning’ but with severe sensory and behaviour issues… which I will not detail in full… but two members of staff at two different schools have been given sick leave due to her – nothing too serious beyond a day or two leave. And she has drawn blood, both to staff members and herself. She self-harms (I occasionally mildly self-harm when distressed, but with enough control that I do so out of sight of my household). On one occasion, 5 members of staff had to restrain her from attacking another pupil. My wife and I were able to manage her better at home than they could at her first Special school (non-residential)… so whilst there was some physical aggression, I was able to intervene and calm it to a degree. For some reason, neither of my two tend to be violent towards me – I think that when they have tried it, my response has been Autistic in some way rather than what they expect… that is my guess, but I do not know. I wish I had had the brunt of it, because part of my own Autism is that I am not very sensitive to pain.

      When the first school gave up on my daughter and said they could no longer cope, the authorities became aware of what we were having to cope with at home. To our surprise, the Authorities suddenly became very active and got our daughter a place in the residential school as an emergency. We had used the correct words and been open about our situation… but the right words do not seem to have communicated the reality to the authorities, until that point. We had no idea that our situation was so extreme. (Like I say, I am not revealing everything here).

      Part of the problem is that both my children are particularly charismatic, humorous and beautiful… and I suppose the Authorities saw my angelic children (and they both can be absolutely angelic and wonderful) and didn’t dream of them having such a dark side. Much the same as, in my case, people see a gentle person who seems a good communicator, and do not see my multitude of agonies within. It is a mistake to think life as a ‘gifted’ Autistic is easy or a walk in the park… though I do not pretend to suggest it is anywhere near as hard on we parents as for many of the people responding here.

      I am appalled that these parents are ostracised from the larger community of support because they don’t fit in with the damnable ‘Autism is Genius’ propaganda rot. I was not aware of this. Mind you, I’d probably find any talk of killing children or Autistics problematic for myself, in all honesty. I do however know what it is like to wish a loved one dead… due to my Grandmother’s illness at the end of her life. We loved her, but we wished it would be over – exhausted by it, and exhausted by seeing the state she was in.

      I have left many groups because I would argue against the propaganda myself, without being aware of the community mentioned here. Intellectually aware of the problems with behaviour many have, and aware of the ‘Low Functioning’ (Horrid phrase) side of the Spectrum… though not living that. Well – living having a High Functioner with severe behaviour… yes, we have experienced some of that.

      Please don’t hold it against all High Functioning Autistic folk… we do not all support the stupid Einstein-type propaganda. Some of us, hopefully, have more of a grasp on reality. I have never been a violent Autistic (though I am a disrupter of order)… I was one of those who were noteworthy by being a peculiarly polite child. A loner. A late speaker. A wetter. A puzzle. A child who was drugged up on medicines that gave me hallucinations… to try and solve me. A child brought up being regarded as shameful.

      My very best wishes to all those who have a hell of a time… but are shunned by the fantasy-Autistic proponents, because they do not fit a cloud cuckoo land view of Autism – whether High or Low on the Spectrum.

      I hope this rambling post makes sense.

      Reply
      • Jennie Ladew-Duncan

        What a relief to read your articulate and even eloquent point of view. I to get very fed up with the Einstein was autistic, etc. Let’s stop making presumptuous diagnoses for dead people and focus on the challenges of the living.

        Reply
      • Thank you for sharing your story. BTW to be clear… it was an outsider that presumed people were talking about killing as a solution. It is a safe place to share when one is in crisis, but it is viewed as crisis….. and people rally support. There is no condoning or encouraging death as a way out. Can we relate to what brings a person to despair? Yes. Might we become that depressed or go into crisis ourselves? Who can say? I think anyone is at risk.
        But as I see it, (and ive been there from the beginning) we would do all we could to support any person and help them not go down that terrible dark road.

        Reply
      • Thank you for replying. Often this community is divided and that is our biggest challenge. Your point of view is very valuable as an individual living with autism and as a parent. I just wish we could all work together to ensure that needs are met across the spectrum and lifespan. It would make this much easier in the long run.

        Reply
  36. As a teacher who works with kids with autism, I’m glad to see this support for families in this situation. I’ve noticed this “autism is a blessing!” mindset, and intolerance of any other viewpoint, among many advocacy groups. Whenever I hear that, I think of how awful this must be for parents of children for whom autism is not just a “different way of thinking.” There’s nothing wrong with having a positive outlook, but it’s terrible to deny the very real experiences of parents whose children are violent, who have no idea what they’ll do once they can no longer physically restrain their child, who have no access to respite care and haven’t slept a full night in years. Your experiences of autism are just as real, and you should be free to speak your truth and seek support without fear of criticism. I hope that hearing this reality will lead to policy changes that give your families the services you need. Love and peace to all of you.

    Reply
  37. As an adult with autism/Asperger’s, I want to commend you for writing this post. Everyone needs to read it. I do not side with the so-called advocates who would be against this. Everyone just needs to be understood, to be heard, and to vent .The realities of this kind of autism versus something like Asperger’s is that it’s like they’re not even the same disorder. I have nothing but respect and compassion for those in the trenches trying to deal with this. I know I would not do any better.

    I have been thinking lately about how all kinds of autism have one thing in common…. intense emotion or intense experience of the world that causes emotions, behaviors or coping mechanisms in an attempt to adjust to the intensity that are, by the standards of the world we currently have, deemed mal-adjustive. Some truly are, but they can ALL be understood in the context of someone trying to mitigate, regulate or cope with an intense sensory or emotional experience in the only way they know how – whether that be screaming, hitting, violence in all the many forms it comes in. Or whether it come in the form of anxiety, panic disorder, trouble taking with others, fidgeting, the more vanilla but still bothersome traits of milder autism. I feel for both those with autism and those who are caregivers for those with autism in their struggle. Just because it has a reason behind it I am sure does not make the reality of it any easier.

    Reply
  38. Jennifer Dinsmore

    Thx for sharing this…the verbage is something I couldn’t come up with.I have a 6 yr-old son w/Autism and Duchenne MD. Sometimes it is hard enough ($) just to pick out your own foods & clothes…Not that we’re not grateful for donated things but….and that’s just the financial….on top of everything else….miss my other boys tremendously too….(one is in a home and the other one moved for work. 23 and 19

    Reply
  39. My heart breaks for all of you as my family went through hell with my older sister’s autism.

    For anyone who has not considered Kerri Rivera’s protocol, PLEASE do so! My parents are starting it with my sister. It begins with a restricted diet (which they had begun 10 years ago, already bringing extreme relief from horrible behaviors like hours of screaming and relentless violence sometimes) and focuses a lot on parasite elimination. There is a facebook group to support this. Best of all, you don’t have to buy through a “distributor” and it is–the beginning steps, at least–very cheap.

    My sister is 33, and I think they are already seeing an improvement.

    https://www.youtube.com/watch?v=lqCDiW9_wVw is a video you can watch to decide if you’re interested in buying her book.

    I’d also love to talk further with anyone at katiecrystal23@yahoo.com.

    So sorry for what you all are going through. May God bring relief very soon to you all.

    Reply
  40. Elisa Larkin

    I have lived this same nightmare since my son was 5 (he’ll be 11 in August). He is currently in RTC (his 6th stay in 2 1/2 yrs). We are one of the lucky families that have found 2 great places for him to go, one specializes in Autism. They don’t always have beds available, most times they find one.
    When he is at his worse, he is attacking teachers, us and anyone who comes in contact with him. His meltdowns can last for hours and physical holds not only last hours, but are emotional and physically damaging to all of us. Since my accident in 2009, it has become almost impossible for me to physically hold him and I cannot chase him. When I must, I end up in bed, in pain for days.
    I have family and friends that support us, but he still cannot be with anyone else to allow us a break, no one can handle him. I didn’t know there was a group for families dealing with Extreme Austism. So I just keep my head down and soldier on the best I can.
    Good luck to all of us as we each face unique challenges on the Spectrum.

    Reply
  41. I love you, thanks for writing this x

    Reply
  42. I belong to one group with over 20,000 members and a yahoo group with over 2500 members just about all of whom live this unbelievable life. I am constantly getting into dicussions with the “I love my child with autism (or I have autism and love it) and wouldn’t change a thing” people. They are getting all the press and it is literally killing people who desparately need help. I think part of the solution, at least in getting the word out, is to change the autism labels. High functioning, aspergers variety of autism should be called something else. As the autism boom kids are all entering their teens and twenties there are more and more, for whatever reason, becoming aggressive, self injurious and destructive. Funding should change from studying genetics to finding out what is causing the aggression and a solution for it. We all love our kids to death but don’t literally want to die.

    Reply
    • Jennie Ladew-Duncan

      I stopped joining those type of groups many years ago. I started an online support group about fifteen years ago for parents or guardians of severe/lower functioning autism because there was too many who didn’t get it, who were almost mean in their judgement and their assumptions when they had no clue. The group of us have been together now “watching” our kids grow up, helping every step of the way. We get the smallest of accomplishments, the worst moments, the sadness for the siblings, etc., etc. It wasn’t till we had each other that I could look at the rest of the families and spectrum and be connected and truly invested. But most people don’t want to hear about our real lives or our fears. I am glad to see this being talked about.

      Reply
      • Jennie Ladew-Duncan

        I wanted to say that many of us knew one another from other groups or real life or both several years before my starting this group, so some of us have watched each other, online or in person or both go through the preschool and/or elementary years, middle school, high school and in many cases through their twenties. A few of us our parents of even older loved ones. It helps a lot.

        Reply
  43. My heart goes out to each and every parent with a child on the spectrum. I myself have a 6 yr old that is on the higher end . I find nothing about Autism to be a gift…..Nothing at all! I worked for many years in schools as a teachers aide for children with Autism, I also worked for many years in group homes for Developmentally Disabled adults many of them with severe Autism. I took great pride in my work and also great joy, there were many great days at school and work, but there were many more very rough days! At that time I did not live with Autism 24/7 and had absolutely no clue what I was in for. I remember begging my sons Dr for it to be anything anything at all…..Anything except Autism. No Autism it is not a gift. I send out my heart to all of you and prayers for calm.

    Reply
  44. I am so glad to find this post and discover there is a Facebook group for parents going through what we are going through . . . I will definitely be messaging Flannery to find out how to join.
    Sadly, it seems like every parent I know with a severely autistic child has had to reinvent the wheel every time — we’ve all been down the same roads, struggled with the same issues, and hopefully found one or two things that have helped. This is why we co-founded (along with two other families) EASI Foundation: Ending Aggression and Self-Injury in the Developmentally Disabled (www.easifoundation.org), a non-profit that supports families like ours. If you have a child in this population, please take a minute to check out our site. We are always looking for referrals of great providers experienced treating our kids for our nationwide resource guide. And even more important, I think it’s vital that we coordinate our efforts advocating for better treatments and share our experiences.

    Reply
  45. I have NEVER been able to understand how parents with a child on the spectrum can be judgmental of fellow parents or presume to know what’s best for someone else’s child. When we are ourselves struggling to gain acceptance for our different child from their typical peers, how can we turn around and discriminate against someone experiencing such hell? I can well imagine that being in a state of siege day and night leaves most of these parents with no time to organize and collectively DEMAND to be acknowledged and supported. You must be supported by people who will have the time to advocate on your behalf. It’s going to be a long hard process but we can get there if we all pull together in the same direction. The first obvious need is for residential arrangements for older kids with autism, Which means the job of caring for them has to pay a whole lot better than it is currently doing. So that’s the first demand we must articulate as a group. Sending my most intense prayers and support for peace and relief from your child’s symptoms! hang in there!

    Reply
  46. My son is 4 and has autism. He is not violent, doesn’t self injure, doesn’t smear or eat bugs or earth or sand. My sister does, and it is terrifying and heartbreaking and leaves you so feeling so utterly defeated and helpless. And that’s as a sibling. I can really appreciate the parents you describe wanting to have their own community, because I stopped participating in general parenting forums a long time ago. There is a need to be around people who get it, whatever your personal version of “it” is.

    Every autism story is different, individual and personal, whether you see it as a blessing or a curse or something that just is, your perspective is only that – yours. Unless you actually live someone’s else’s life you can’t possibly understand it fully, or have their perspective.

    So I think we need to just try to be humane to each other and, unlike a previous poster, I think those who have more capacity for giving should give to those who have less, particularly those who are hanging on by the skin of their teeth.

    So yes, I am going to fight for my son to make good progress at school and make friends and improve his language, but you know maybe I can also promote awareness so more adults with autism can get into employment, and maybe I can also find a local family who is really struggling and offer to be a punchbag/poo wiper/shoulder to cry on for a few hours a week.

    Not getting your story should never be a reason for abandoning my compassion.

    Reply
  47. How can I join this group? I need this group. I need others to connect with that are going through the same things my family is.

    Reply
  48. How can I help? Is there anything I can do?

    Reply
  49. Thank-you for this. Now I know I am not alone. I feel lost all the time because I cannot get the help my son needs. He is aggressive and I hate that I have to constantly protect my baby girl from his pinching, biting and scratching as well as myself. We don’t go out much because I am afraid of him running off.

    Reply
    • Oh, Sue, I hope you find help. Did you see my above link? Kerri Rivera? This is helping my parents, I believe; I can keep anyone posted who wishes to get in touch.

      Reply
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  51. My heart breaks while reading these testimonies. Believe me, I was so there myself as a mom with a non-verbal severe 11 year old autistic son. My son has broken windows with his head and caused scars on my body from aggression. At one point I thought things would never change and my family was sentenced to a life of misery. By a stroke of luck, I found out about Rapid Prompting Method (RPM) and saw Soma in her HALO clinic in Austin and learned how to teach my child and develop communication. We are now a year and a half into this style of communicating and it has been a lifesaver. We have a joint blog with mine and my son’s writings at http://www.faithhopeloveautism.blogspot.com with lots of links to resources and other blogs by non verbal people. Stories like Carly are real but are presented as if things changed overnight and it wasn’t difficult. Change can happen but it is a lot of work and does not happen overnight. You also need proper training by someone who has perfected a technique over many many (hundreds at this point) kinds of students like Soma has. Just putting a letterboard or computer in front of your kid will not work! Change is gradual and hard but it will come if you persist with the proper technique. I would strongly urge your readers to contact someone trained in RPM, like Soma (www.halo-soma.org), Erika Anderson or Jackie Dorshorst in Wisconsin, Elizabeth Vosseller in Virginia, Lenae Crandall in Utah, and perhaps there are others I have missed. You can’t say it doesn’t work for your child until you give it a serious try. I continue to feel united in heart and spirit with all parents of autistics and do not judge because I am like you and want the best for all our kids.

    Reply
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  53. Thank you so much for writing this. It touched me in so many ways. First, fear for those moms and dads. And even fear for my future. I hate that it is so hard. It makes me so angry. I have a 3 year old I can’t handle most of the time. I can ‘t imagine what life may be like when he is 15 or even 20. I want to hug those moms and dads. Give them a break. Let them shower and sleep for days. Again, thank you for writing this. There voices need to be heard. And you did an excellent job.

    Reply
  54. This was an amazing and powerful post. I’m a teacher of students with special needs. I worked for 4 years with students with severe and violent autism. Many people gasped when they would see the bruises and scars from my students. The school was residential so for all of you out there fighting with and for your kids at home every day I am sending love, support, and prayers. You all are the strongest people and I hope they find a cure for this soon. For those who believe its a blessing they may opt out but for those who truly need this it is vital that it happens soon.

    Reply
  55. Pingback: My special needs reads #2 | Autism & I

  56. Yeah, it’s so damned hidden I can’t find it. I guess it will be like that. Always sitting here, alone with no one who understands or to talk to. I ranted about those groups myself the other day. Some parents have what I call designer autistic kids. They seem to celebrate the illness and wear it like a badge of honor. My oldest son is higher functioning while my youngest is severely disabled. I can attest to the fact, that the two extremes are no where near the same. My oldest son’s issues are a drop in the bucket in comparison.

    Reply
  57. Pingback: My special needs reads #2 – Devina Divecha. Journalist.

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