Please Don't Tell me Autism is a Gift

Every time I sit down to write, I often already have a positive message to end on in mind.  I don't have that today.  Today I am sad, I am angry and I am coming from a place that I don't often go: a place with walls papered by self-pity and lighting dimmed by exhaustion.  We have all been there, but of course, we try not to live there.

I read story after story that highlight the aspects of having a child with autism that are positive and uplifting.  I have written many posts that do the same.  I think these stories are important as they help to spread awareness and acceptance, they celebrate our children holistically, which is great because our children deserve to be celebrated.

I wonder, though, if sometimes we sugarcoat or put a positive spin on reality to make ourselves feel better or maybe to avoid coming off as a victim.  After all, bloggers who have written more negatively about their children with autism are often scrutinized and demonized.  Another reason I usually stay away from the negative: I don't want my child (or others with autism) demonized or people to think any less of him.

As positive as I try to stay, there is a reality with which we have to contend.  That reality usually gets to make a short appearance in my blog in sentences like "Of course we have our challenges." or "And even though he struggles..."  Anyone affected by autism knows those phrases are emotionally charged.

But I started thinking.  People outside of our household, people outside of our community, must all be scratching their heads and wondering if our children and their autism are so great and so gifted why are autism parents so vocal about needing help and advocating for their children?  Why would a savant be labeled disabled or need to receive special services from a school district?

Autism is a spectrum disorder.  No two people on the spectrum are the same.  Many of our children are not savants.  Many of our children are not even on target with their development for their age.  Many of our children will live with us for the rest of their lives.

So, please, don't tell me autism is a gift.  When my child has been screaming every thirty minutes all day long and we have to go to the store and he screams at the check out, the cashier telling me he'll be okay and will be great with numbers when he grows up is NOT what I want to hear.

When I look into my son's eyes when he doesn't understand his surroundings and his anxiety and fear are palpable there is nothing in this world I would not do to take that fear away.  You cannot look into his fearful, panicking gaze as he is shaking and cowering from everyday stimuli and tell me this is a gift or an enlightening experience.

Please don't tell me his autism is a gift as I take his little sister to the hospital for a concussion resulting from an impulsive outburst that he could not control.

When I see his older brother with tears in his eyes yet again because his little brother doesn't want to play with him or has lashed out at him, I don't accept that this is a gift.  He is hurting and his needs are put on the back burner everyday, I see no positive in that other than I'm hopeful it will build character and instill compassion in him.

As I bang my head against a wall just trying to get my child an education like everyone else is entitled to, I wonder if outsiders know just how "challenging" it is.  We are in a district in a state that won't even provide classes for preschool children with special needs.  So I found a private preschool that would take him, but he has so much anxiety about going every morning that he screams the whole way there and as his teachers carry him in.  I have a laundry list of therapies that are medically prescribed that I have to work around the clock to access for our child.  Once we finally have established providers we drive and we schedule and usually have some type of appointment everyday.  These are not groundbreaking therapies that are going to have my child doing quantum physics or painting masterpieces, these are necessary to get my child to function high enough to dress himself and feed himself and to allow him to tolerate being in a room with everyday noises.

And then there is the loneliness.  Please don't tell me autism is a gift when my child and his siblings are no longer invited to birthday parties because parents don't want one of my child's meltdowns to ruin their kid's special day.  When I stop having friends outside of the autism community because other people don't want to hear about autism and how it is consuming your life, it doesn't feel like a gift.  Unfortunately as much as it consumes our lives, it consumes our conversations too.  And that doesn't make for great girl's night out conversation.  I can't say I blame former friends for throwing in the towel, but that doesn't make it any less lonely.  The gift that keeps giving.

I know some will be offended by this post, but just as my opinion is that autism is not a gift; you, of course, are entitled to a different one.  For me, autism is exhausting and I feel like every minute of everyday is spent trying to break my child free from the anxiety that consumes him.

Please don't tell me autism is a gift.  My child is a gift; his autism is a disability.    



Comments

  1. Oh yes that look they give you, that mama please help me fear of god look, while they are screaming uncontrollably, breaks my heart that look :( I get it... I totally get all of what you just said...

    ReplyDelete
  2. Oh I so wish that I could just give you a great big hug and a shoulder to cry on. Sometimes that's just what we need. Today it's tough and unbearable, but it will get better. Hang in there.

    ReplyDelete
  3. Yes I wish I could give you a hug too. Thank you for being real and honest. Much love, respect, and appreciation.... ps. i just spent the last hour trying to figure out how to get blogger to accept this comment. Thats how much i wanted to tell you how much i liked what you said!

    ReplyDelete
    Replies
    1. Ha! Not sure what the deal is there, but I am so appreciative you took the time to read and comment.

      Delete
  4. As much as I try to see the autism spectrum with positive eyes, I totally agree with you. I've been there so many times!! My son is a wonderful gift, but his autism sucks!!!

    ReplyDelete
  5. Thank you for this, it's SO TRUE!! ❤️

    ReplyDelete
  6. I also try to look on the positive side and look at my son's strengths, and while he is very high functioning and overwhelmingly intelligent, I dread the ringing of the phone or the bleep telling me an email has come in knowing that a teacher or the principal is calling to tell me about an outburst or other behaviour issue. I know my son is a gift and he is awesome and I love him. I know in the years to come when he gets himself and the world figured out he will likely be productive and invent or create something, but damn it I cry and scream over the "challenges" we have and will have before we get there. I'm with you on this, I gloss over the bad so no one pities me or him but damn it this is HARD and not a gift, unless you consider a kick in the gut a gift too! Thanks for this

    ReplyDelete
  7. agreed! when life is just too hard for a child to exist and be happy..... that's not a gift... medical issues (love your title, my son's bowels don't work- ha)... he has a cecostomy in place so every night at the same time (because he's so rigid - since age 4 he's now 10 1/2 he has to sit on potty for an hour or longer so we can flush his bowels... when the world bombards their little bodies and brains... food is too hard to swallow because of poor muscle tone, so feeding therapy is necessary, but then they can't stand the smell, texture or even sight of many foods... that's not a gift- when they starve themselves because it's that bad..... so more therapy.... and well, more doctor's and therapists than friends... that's pretty sucky.... but he started to dress himself at age 8, starting to brush his own teeth age 10, (showering, bathing still very difficult)... but he's eating food, usually same food, but it's food.... he still is unable to sleep on his own, but we're hopeful... because at least he's sleeping... how many years of NO sleeping- of screaming for 4 hours a night... unable to communicate needs/wants... this is another side of autism that is rarely talked about... never in the media... but for many of us- it's our new normal... and well, I guess one thing is we certainly enjoy the simplest of things, the tiniest things bring us joy, that bring him joy, a pure smile or laugh.... the smallest of progress... that in hindsight you realize is WOW... but always knowing there are setbacks, just like with the time change... oh hell that has thrown us all back up against the wall... seems like no big deal for many- for us.... well, a bit of hell- now that my son is 10 1/2 bigger and stronger, and when he can't control himself, well, yeah not pretty.... at all.... and at times scary... and honestly as he's gotten older, I find I"m so careful of what I say, because I don't ever want authorities to take him away for being a danger to himself or others.. we have a handle on it (usually)... but so many don't understand, and he hits.... but we've also made incredble progress... :) that brings me hope! (until the next big holiday, change in schedule that I can't control- haha lol.... a sense of humor is always good! hang in there... there's a lot of us out there who "get it"!

    ReplyDelete
  8. Thank-you for posting this. I feel the same way, my Nicholas has low functioning Autism with Phelan McDermid Syndrome. I love him more than life it's self, but I don't "love" autism and I am not going to wear a t-shirt, buy an iphone cover or proclaim my love for a disorder that has made my life so hard. So bravo . Thanks for posting!

    ReplyDelete
  9. Hugs to you. I totally understand! I pray for the anxiety to go away. I hate to see him scream at everyone. Yes, he may "recover quickly", but I hate that it happens in the first place. It's so hard to see the child you love and adore struggle.

    ReplyDelete
  10. This is the best blog relating to autism that I have ever read.

    ReplyDelete
    Replies
    1. Thank you Martha, and thank you for taking the time to read.

      Delete
  11. I so completely agree with this. I have two kids and both are on the spectrum. The problems and loneliness inherent with having kids with this is overwhelmingly stressful.

    ReplyDelete
  12. Let me start with that I agree with you 100% as what my opinion is might not jig with some people in the autism communities.

    As a Dad of to able boys ages 11 and 16 and an autistic princess age 10, I'm face with most of those challenges you describe.

    Our daughter spectrum is one that thankfully helps backup our believes. Her "status" was molded in part by leanux gastar symdrome, a form of severe infant seizures afecting her age/intellectual index considerably.

    But this is how we see Rochely. She's non-verbal YET because we got a lot to learn from her reactions that words might just be ignored or silenced in the noise of kids playing video games, dogs barking at each other and things moving outside.

    She does everything with a smile and a hug and ocationally nibbles on your arms, legs or whatever part of your body she is closer to.

    She don't complaint when sick but I make sure to have extra snacks for seconds and thirds. When a bump to her head, caused by her stimuli swings moves causes you to have tears in your eyes and let go a word you should had not said - because it hurt your head more than hers. Yeah she's laughing while you take an aspirin. And I could go on and on.

    Our reality is based that the planet outside our home is shared with all kinds of mentalities that are for the most part different than our concience state of mind.

    We choose to believe positive and live as all is posible. If I got a choice to believe my daughter's condition is deteriorating our family then I opened up to the possibility that it is...and how does that helps her when she don't know how to express her opinion in the matter. I live for a better future for our kids. New research is being studied now that will exalt them to a new level of concience. Or do you want to believe less or wish little for your own kids.
    We have been blessed to find the best natural sources of suplements to replace most of the side-effects-meds and enjoy her lifestyle.
    Everyones is entitled to their opinions but as for use, we choose to believe a brighter future is ahead for our daughter and every one with austism.

    ReplyDelete
  13. This is exactly what I needed to read tonight. You are not alone... thank you for sharing this with us!

    ReplyDelete
  14. Bless you. Oh bless you. You found the words I couldn't. My CHILD is the greatest gift I could ever have. His AUTISM is a trial, disability, and frustration, but my son? My sweet, loving, amazing child is a GIFT.

    ReplyDelete
  15. Oh, yes, so we'll said. I hate it when people say 'autism is a gift'. It is them in denial, not yet able to accept that their child is not perfect. Autism is limiting my son's life and will continue to do so. So ok, he has a great ear for music and can tell you what note is being played (and when it is out of tune). Big deal! He can't read. He has no sense of how life works and how to get a job let alone keep one. He does not know how to make friends and won't be able to get a girlfriend. ! I don't call that a gift.

    ReplyDelete
  16. Thank you thank you thank you for being so honest! This is exactly what I have been feeling as of late and have been feeling guilty for feeling this way. Thank you for letting me know I'm not alone

    ReplyDelete
  17. This comment has been removed by the author.

    ReplyDelete
  18. Autism is not a gift, it is a label and only a label. Parenting any child can be challenging at times wether neuro typical or Autistic. I look at all of my children as gifts with and without special needs. My feeling is the gift of Autism is how it changes the way we think and feel. We tend to become more aware and grateful for things we used to take for granted. Like hearing a mom in the store tell her child to stop asking so many questions....oh what I would give to have my child verbally ask me one question let alone a slew of them. Like cherishing any quiet, peaceful alone time we may get, or just being able to go on a short vacation. Instead we learned how to do things differently, not better, or worse, just differently. Are we tired emotionally, mentally and physically? Yes, however we tend not to be all about the material things in this world, but about real things, true things. We are truly gifted in these ways. I'm also forced to learn daily in many areas as to what will help our child because as we all know those that are traditionally suppose to have the answers don't so we are forced to become our children's specialists. We also grow creatively as well. We are constantly challenged to find new and innovative ways to help our children to succeed in what the world views as simple. Like going into a restaurant, or just getting out of the car. So to me Autism is a label and the challenges it brings are gifts.

    ReplyDelete
    Replies
    1. I agree that there are always positives we can find in the experience. We learn, we grow, and we appreciate the little things more than most.

      Delete
  19. I am a 43 year old male Aspie who was diagnosed 2 years ago. I have lost good friends and girlfriends previously because they couldn't cope with my outbursts, silences and anxieties about regular life. They were good friends, they just couldn't understand or cope around me. I bear those people no ill will.

    Loneliness is part of life, as it is for everyone. I have to step out of my anxiety that another person will reject me and take the risk that this new friend might be able to cope. I have to live positively because there is no alternative.

    I know that I have missed many opportunities to enjoy myself because my anxieties or experience of painful stimulus levels were stronger than my desire to take the risk that doing something 'normal' would be worth my extra pain and risk.

    I don't share how I feel because people get upset when I share honestly so I don't share. I will have this 'condition' for the rest of my life.

    My question to every Aspie and parent of an aspie is this- If you didnt have aspergers syndrome would you would be a different person and a not necessarily nicer person? My having aspergers has shaped the caring, sensitive, tolerant adult that I am. Take away my aspergers and my meanness, my spite might have free reign to hurt the World.

    Lee

    ReplyDelete
    Replies
    1. I have wondered this myself. Which parts of my son are his personality and which parts are contributed by autism. There is no doubt in my mind that some of the things I love most about him (his excitement for life, his amazing memory, etc.) are a part of autism. I would never want to take those things a way, but it is not my reality to only focus on the positives as is the new trend. All of the struggles you have had personally are real struggles which you shouldn't have to sugarcoat just because it makes people uncomfortable. Just as some in our community are offended by me saying it is not a gift for me, those of us with children who are more severe are offended by those who speak as though it is a gift for everyone. My child is an amazing gift, and he has amazing gifts, but if I could take away his daily struggles and his fear I would do it in a heartbeat. I do not consider autism a curse either, but it is a struggle. As society we tend to always swing too far one way or the other as to what is politically correct to feel. I would argue by only talking about the positives and the "gifts" of autism we are doing the autism community and the world a disservice.

      Delete
  20. 1 in 58 kids are on the spectrum -- so you'd think there would be screaming melting down autistic kids in every other classroom, scout troop, etc.

    But there aren't.

    Clearly, it is possible to reach an autistic child to communicate and behave in a non-feral manner. Many, many parents just can't be bothered.

    And their kids suffer for it. Particularly if they CHOOSE to blame their loneliness and isolation ALL on their kid!

    ReplyDelete
    Replies
    1. That would be because the Spectrum of possible behaviors is so large, not because we have taught our child to fall in line.

      Delete
    2. While 1 in 58 children may have autism, 1 in 58 children are not severely autistic. And I hope you aren't inferring that I am one of the "many parents" who cannot be bothered. We work very hard with our son and have appointment after appointment to help him progress. And he is progressing. There are not nearly enough services or resources for our children and to only highlight the gifts and not talk about the obstacles is not helping anyone.

      Delete
    3. Ugh! The endless blame teachers place on parents - and they don't just do it to parents of disabled kids, but abled kids too. They seem to adhere to the 19th century schooling view that all kids are the same and all should respond well to the conforming nature of school. And if they don't it isn't because of personality difference, or learning disabilities, or the failures of the restrictive school system, it is because their parents are lazy. What??? We are lazy?? We don't know how to handle our child? We have only been with them 24/7 for their entire lives, in fact for 9 months before. What would we know? We don't have education, we may not be trained in teaching, or psychology. WE haven't spent hours, years of our lives desperately trying to help our precious child?NO, we are just dumb at home housewives who know NOTHING. We are stupid and uncaring. Yet a teacher, who has our child for a few hours for only a few weeks (it is often early in the school year when they come out with this) or maybe have never even taught them, who know EXACTLY what to do and how to handle this child, because they have read a 200 page book on an introduction to autism. What??? Oh yeah, routines, rewards and consequences, and use of written labels to help communication. Yeah, that solves it. Jeez, why didn't I think of that? Oh my, the utter agony of being told by such a person that you have no idea how to parent your child and you are lazy! My god, the ignorance. And no I don't mean all teachers, just those type. And yes I do know about teaching as I have been a teacher myself!

      Delete
    4. Two of my unclesand my nephew are on the spectrum -- the first two are delightful, have graduate degrees and all sorts of train-related patents, the latter is 9 and a train-obsessed honor students.

      My sister and I grew up faculty kids, as our parents are academics -- probably 1/3 of their faculty colleagues would be formally on the spectrum had they been born 40+ years later. Almost half my parents current grad students are on the spectrum, looking back, that's probably a constant figure.

      My kindergartner's bff is a classmate, a non-verbal autistic girl (with an iPad "talker").

      It is sad so many parents don't love their kids enough to teach them to communicate!

      Delete
  21. "I love my child...I hate his autism" is a pretty often heard statement around my house. There are days and then there are DAYS and I can totally relate to this post (especially on the DAYS). Virtual hugs and at least a 10 minute Mommy Break for you :)

    ReplyDelete
  22. I guess where you and I differ is that - well for starters BOTH myself and my daughter are at the 'higher' end of the functioning scale (dx. Aspergers) ... BUT, also because I separate the Autism from the Anxiety ... I started my life with JUST Aspergers / as did my daughter - pretty much blissfully unaware about anxiety in the beginning ... then it creeps insidiously in - I wouldn't necessarily describe Autism as 'a gift' and I definitely agree it is a 'disability' BUT if I had the chance to take away my own Autism or my daughter's Autism - I definitely would NOT ... on the other hand - I would get rid of her (and my anxiety) in a heartbeat!!!

    ReplyDelete
    Replies
    1. I certainly understand your perspective. And you are right, there are personality traits he has and perspective he has that I think are related to autism that I would not want to take away. I don't consider autism a curse as some have commented. I hope our community can talk about all aspects of the spectrum openly without judgment so that those that need help (especially those with more severe autism) can get the services they need to make their lives as full and meaningful as possible. My son's anxiety is so high, which I believe is almost entirely related to his sensory defensiveness, which is caused by the autism. And I hate that for him.

      Delete
  23. I appreciate your honesty. I am right there with you---my latest post was about just what you are saying. I want to be positive, but when my daughter has spent the whole weekend trying to bite me and not using the potty, and she is 10 and it's been like this for what feels like forever...I can't be positive. Tomorrow is another day. Which might be just as tough, but maybe not.

    ReplyDelete
  24. I explained to someone just the other day how some people who diagnose tell you that your child has autism the same way someone else would hand you a gift and say "happy birthday" or "merry Christmas." They don't tell you what to do next or what that means. . . They just kind of walk off while you try to understand your broken dreams.

    ReplyDelete
  25. a disability is part of the natural human experience, according to the American Disability Association, and therefore, part of a person. you can't hate a natural part of someone and still love them.

    ReplyDelete
    Replies
    1. It is not a disability...its a disease and you would hate it if you had it at home

      Delete
  26. Actually I'm not going to tell you that Autism is a gift because it is not! All Autistic children don't have gifts either. Since intelligence is a different diagnosis than Autism an Autistic person can have a very low IQ or very high IQ. Autism can be a disability for some and yet others can hold down jobs, drive cars and be self supporting and everything in-between. Why do you think Autism is called a Spectrum? True I have a gift for art but I've had a lot of Autism related issues while I was still in the workforce that got me fired from a couple of jobs. Autism has been a real struggle for me as a kid and is still a struggle since some of my symptoms are now more severe.

    I feel like I'm borderline and is not quite to the disabled side. So I will just say I'm luckier than many Autistic people and you will never hear me sugar coat Autism putting it up on a pedestal. All I want is acceptance and understanding from those who have either barely there Autism or Aspergers and from normal people.

    ReplyDelete
  27. Nate, what is she hating? Mandy, isn't demonizing or anything else. She isn't like Autism $peak$. The mother next door is going through the same thing with her severely Autistic daughter as well. But, some Autistic people who are mild don't seem to realize there is a Spectrum with varying severity of Autism. And that is where they need a reality check.

    ReplyDelete
  28. most non-autistic people like her don't seem to realize that a lot of autistics don't actually think of themselves as sick. it's the non-autistics who don't like autism, and they really don't understand because they aren't diagnosed and never have had it. sure non-autistics can understand autism but not as much as autistics can, and that's because they actually live it.

    ReplyDelete
    Replies
    1. This comment has been removed by a blog administrator.

      Delete
  29. I totally agree with Mandy!

    Nate you and other higher functioning people need to realize your lucky. Your lucky to be able to say you autism is okay.

    However you need to look at the other side of the coin. I could have wrote that article, my child is a lot like hers. You say we don't understand you, but at the same time you don't understand us. You don't know what it's like to be a parent that has child,who can't speak, who people don't want to be around, who could be violent, who had melt downs. I love him very dearly he's my heart, but if there was a pill I could give him to get rid of autism, I most certainly would give it to him. Because he will never have your quality if life. And he will never have the quality of life of any other high functioning autistic person.

    And that is my opinion and I'm allowed to it. I feel autism is a label. It doesn't define or make him. He is my baby I think the world of.


    Stepping down from my soapbox.

    ReplyDelete
  30. stop trying to silence me, my words. i may be higher functioning, but if you aren't autistic, the chance of you really understand autism are slimmer

    ReplyDelete
  31. stop trying to silence me, my words. i may be higher functioning, but if you aren't autistic, the chance of you really understand autism are slimmer

    ReplyDelete
  32. and by the way, I am thankful, I just want you to realize that autism should be given a chance to do good in any case, and you won't let it by calling it a "crisis" because that diminishes any chance that your child might have to give something to the world. you don't really understand what autism means if you think it's so terrible, because it doesn't have to be. it's only bad if you choose to make it that way and not do anything about it.

    ReplyDelete
  33. study after study has shown that autism is linked to better cognitive ability and may even have helped humanity progress from the caveman days. if you get rid of autism, you're just turning people into cavemen. not that being non-autistic is bad, but as Temple Grandin said, if autism went away, we'd all do nothing but socialize and not get anything done.

    ReplyDelete
  34. and by the way, neurotypicals like you parents are the ones who are more higher functioning.

    ReplyDelete
  35. This comment has been removed by the author.

    ReplyDelete
  36. Try that again. Screwed up.

    When a child who is now a man, is this severe a cure is justified, Nate. What parent would want to deal with this? And why can't you understand that there are many severely Autistic children out there. Maybe you would be willing to take care of such a severely Autistic child.

    https://www.youtube.com/watch?v=j4PTf7LgsIE

    ReplyDelete
  37. no it isn't. you must give their autism a chance to improve. they may not do it as soon as you like, but please, there is no need for a cure. autism is not a bad thing. it can be good if you just be patient.

    ReplyDelete
  38. i know there are many. i just think they don't need a cure, but treatments for their co-morbid conditions. and if you're gonna be upset about them being nonverbal, just think about trying to teach these people other ways of communicating.

    ReplyDelete
  39. loneseerious you are right. Nate I'm truly sorry you don't understand where I'm coming from. Autism in my sons case will never improve. He's a grown man, he's severe and he would not be able to be on the internet like you are. I'm glad that for you autism has not been a hindrance, but it has been for him.

    I agree you don't seem to need to be cured from anything, but my son does. He will never go to college, never hold a job, never get married. And I accept this and I love him. But if they found some way to have him on a level where, he could speak, could some what participate in society I would take that.

    You don't know the fear of having child who can't speak and being worried that someone, might hurt your child and you might not know because they can't tell you

    ReplyDelete
  40. it can improve if you just try. never give up on it no matter what. the improvement may not occur when you'd LIKE it to, but it will still happen.

    ReplyDelete
  41. your son doesn't need curing from anything either. perhaps you do from your negative "problem person" attitude? why not focus on what will work for him instead? no autistic needs a cure, but things that will work for them.

    ReplyDelete
  42. cures just turn autistics into cavemen. the only reason for that fear is because society expects people to use their physical words too much and don't give any leeway for people like your son who aren't able to speak to be able to learn any other type of communication. the problem isn't autism, it's society.

    ReplyDelete
  43. cures would take away benefits autism gives. autism is shown to be linked to better congnitive ability and is proven to be genetic. you can't separate autism from someone, ever. temple grandin said it was only autistics that invented things like TVs, radios, computers, ect. you really want your son to be like someone who only socializes?

    ReplyDelete
  44. one of the problems with you is that you don't see any deficits in me. i DO have deficits. you can't see any assets in your son, and that's helping keep him from wanting to do things that would impress you.

    ReplyDelete
  45. I think everyone is just wasting their time trying to talk to Nate, because he don't have severe Autism if he has Autism at all if people can't see any deficits. He apparently don't know what it's like to have severe Autism or have to take care of a severely Autistic child.

    People can sure see the deficits in me because I don't know how many times comments were made about them. Though my Autism hasn't affected my intelligence which is only normal, it is severe enough to make me realize what parents of severely Autistic children have to deal with.

    ReplyDelete
  46. i think i'm just wasting my time talking to these parents because they aren't autistic in therefore have a harder time understanding autism than i would

    ReplyDelete
  47. the big reason why autistics suffer isn't because of autism, but because our society gives a leg up to non-autistic people and don't give autistics a chance

    ReplyDelete
  48. Nate, I do not intend to delete any of your comments as I think they add to the discussion and I did not find any of them hateful or disrespectful. Let me just say, though, you, as a higher functioning individual on the spectrum, are of course entitled to your opinion that autism is a gift. And I do not deny that my son has gifts related to autism. However, my sole purpose for writing this was to draw attention to the struggles that those on the spectrum and their families must work through. You act as though parents are not entitled to an opinion and that my view of autism must be the same as your view. Neither of us are wrong or right, but what is wrong is telling others how they must feel about their child's or their own autism. My child is not suffering simply because society is not accepting enough. We haven't even gotten to the bullying, the isolation, or the discrimination that he will go through as an older child and adult. My child is struggling due to his extreme sensory defensiveness and anxiety that controls him every moment of every day. I wish I could take it all away, but the fact of the matter is I can't shield him from every stimulus that is going to cause the next meltdown or cause him to start shaking, covering his ears and screaming to try to escape. This post has nothing to do with neurodiversity, I am simply saying if we keep with this new trend in which it is only acceptable to talk about the positive aspects the world is not going to know my son's struggle and others' struggles and how much autism for some can be completely consuming. This trend of not being able to talk about autism as a disability has outsiders confused as to why children and adults in our community need help, need medical care, need special education,etc.

    We have to talk about all aspects of autism, not just the positives and not dwell on the negatives, but we owe the world a more holistic view of what having autism means. It is a spectrum and for the world to only see those that are in college at ten or playing ten instruments at eight is not a realistic picture of what autism means for many individuals and families. We of course should celebrate the successes and be inspired by the amazing, but it shouldn't be taboo to address the other side.

    ReplyDelete
  49. I would have never made it through school finally graduating if it hadn't been for so many great neurotypical teachers who cared. In fact many neurotypical people care more for us who are on the Autism Spectrum than others who have at least high functioning Autism. Love your reply, Mandy. Well said.

    ReplyDelete
  50. This comment has been removed by the author.

    ReplyDelete
  51. An excellent post. But your school district must provide services for disabled children, from birth on. It is federal, not state, law that requires it. Here are a couple of links:
    http://www.parentcenterhub.org/repository/ei-overview/
    http://www.parentcenterhub.org/repository/preschoolers/

    ReplyDelete
    Replies
    1. I agree, some families have filed civil suits in this area, because it is so bad. They have tried to get around it by providing services (OT and ST very limited and "instruction" very limited) but they do not provide a setting. We had to find our own preschool to take him, which technically the state should be paying for!

      Delete
    2. The "services" offered in mainstream school districts are extremely lacking. My son was offered 30 minutes a month during pre-school for Speech, OT and PT. That's not even remotely enough support. We are fortunate to have pretty decent insurance which covers these therapies for us, as well as ABA, but it has been a long and drawn out process, when it comes to getting the referrals for these services. As far as the school district was concerned, my son could either conform with the services, (minimal that they were), at our home school, or I could have him bused across town to a school that had a "Autism" classroom, where he could spend part or all of his day in, depending on what his" needs" were. It is unfortunate that there's not enough support established in mainstream schools. They tend to offer, the minimum of what they are legally obligated to, not enough to be beneficial for our kiddos. Just my observations...

      Delete
  52. Thank you so much for writing this. It's like you read my mind. I wish more people really understood what it's like.

    ReplyDelete
  53. Life with Autistic child is draining enough and than stupid society wants from you to become completely stiff and closed with real emotions...there is nothing to be happy or grateful about...and society wants you to talk all that untrue corny shit about your motherhood and life with Autistic child. People who wants from you to pretend and to not go towards real experience and all normal and real emotions that this situation is giving you are filled with insincerity and hypocritical and way more selfish than anyone who says all the worse parts about life you described. This society wants you to stay quiet and to not disturb their "lolly pop " life. Grose!!!

    ReplyDelete
  54. My son is almost 9 and can finally dress himself. Brushing his teeth, wetting his bed, tantrums, fleeing, abusing his siblings. I'm so over it. I cannot be the Mommy he needs. I'm trying. Social group therapy, school assistance, personal therapy for him and myself, the family denial we deal with, just everything. His clothes feel wrong, the food is not crunchy enough, his sister's laugh too loud, his baby brother touches him too much. It all gets so overwhelming. I effin hate it. I thought I hated my kid, turns out, I hate Autism. Is my kiddo super creative building things and wicked quick at strategy games, he sweeps me under the table at Candy crush, but he doesn't color, and his writing gets worse every year. Attention spans, outbursts, it's almost as if he gets worse with age and regresses with age. Like I said, he's almost 9 and most days he wakes up and I don't k ow if we have a happy 4 yr old or an angry 3 yr old with a nine yr old intelligence. I know he's overwhelmed. I'm overwhelmed too. People are so quick to judge us parents who cry and lose it after day and day of those DAYS, calling us horrible. Good luck when it's your turn. Tell me how wonderful it is when it's your kid that you're not sure will ever mature past the age of 5. He's still my sweet baby boy, only as an angry hormonal 9 yr old. Makes the terrible twos look like a birthday party. Autism is no gift, it's a curse and it's horrible and I would pass it right back to our maker given the choice.

    ReplyDelete
  55. My son is almost 9 and can finally dress himself. Brushing his teeth, wetting his bed, tantrums, fleeing, abusing his siblings. I'm so over it. I cannot be the Mommy he needs. I'm trying. Social group therapy, school assistance, personal therapy for him and myself, the family denial we deal with, just everything. His clothes feel wrong, the food is not crunchy enough, his sister's laugh too loud, his baby brother touches him too much. It all gets so overwhelming. I effin hate it. I thought I hated my kid, turns out, I hate Autism. Is my kiddo super creative building things and wicked quick at strategy games, he sweeps me under the table at Candy crush, but he doesn't color, and his writing gets worse every year. Attention spans, outbursts, it's almost as if he gets worse with age and regresses with age. Like I said, he's almost 9 and most days he wakes up and I don't k ow if we have a happy 4 yr old or an angry 3 yr old with a nine yr old intelligence. I know he's overwhelmed. I'm overwhelmed too. People are so quick to judge us parents who cry and lose it after day and day of those DAYS, calling us horrible. Good luck when it's your turn. Tell me how wonderful it is when it's your kid that you're not sure will ever mature past the age of 5. He's still my sweet baby boy, only as an angry hormonal 9 yr old. Makes the terrible twos look like a birthday party. Autism is no gift, it's a curse and it's horrible and I would pass it right back to our maker given the choice.

    ReplyDelete
  56. God Bless us all! I'm a dad and I agree. I love my girl with all my heart, nevertheless; hate autism. Sometimes I feel that everybody wants us to say that, it's not that bad, that everything is going to be ok, etc....and of course every kid in the spectrum is going to turn out like Temple Grandin..No, for a lot of us the possibilities of struggling with our kids until the end of our time here is a reality.

    For some, everything will be ok, and God Bless them for that. The sooner we accept the possibility that we could be in that group where things don't turn out ok, the sooner we can prepare emotionally, financially and in another way we can for what may be coming.

    My kid is so aggressive that the last time my wife went to the doctor she had bruises in her arms so noticeable that they asked her if she was being the victim of domestic violence...no, autism is not a blessing.

    Everything that happens here has the ok of God, and there is purpose to it, but, it still doesn't change the fact that it really sucks.

    ReplyDelete
  57. You really need to check the co-morbids or secondary conditions of Autism rather then attacking Autism itself. You also need to check out his diet too. But, don't blame Autism.

    I'm an Autistic adult and thank God I'm not like Temple Grandin either who is an ableist. But, I can tell you increasing my Vitamin D3 has greatly reduce my self injurious behavior during my meltdowns. But I blame my meltdowns on my Bipolar, not my Autism.

    ReplyDelete

Post a Comment

Popular Posts