Problem’s with Autism Awareness
I have been wanting to write this for a while but honestly it seemed to exhausting to do. This has been eating away at me and I need to just get this off my chest and move on. I’m not sure how this will turn out but I want to make a few things very clear as to avoid any misinterpretation. Everyone’s problems are relative and I get that.
I am by NO MEANS trying to belittle anyones personal experience with Autism and its impact in their lives. Now with that said, there are some things I need to say.
Autism and my family
I’m the father of 3 Autistic boys. My boys are each in different places on the spectrum (ranging from low functioning to high functioning) so I have very unique experience and perspective that most don’t have.
Gavin and Elliott are our Aspergers kids. Gavin is “functioning” but not “high functioning”. He also has a host of other mental health issues, most notably schizoeffective disorder. Elliott is our middle child and is “very high functioning”. Most people unfamiliar with what Aspergers actually is, would not know that Elliott has any problems but he does. His issues mostly revolve around anxiety. Gavin will most likely never be able to function independently without supervision. Elliott should be quiet successful in life, as he is more enhanced by Autism then hampered. 
Emmett is our youngest and he is Autistic. He is “low functioning” and significantly developmentally delayed. He is pre-verbal meaning he does have a few words but little to no language skills. He was believed to be non-verbal but has picked up a few words so pre-verbal is more accurate. He is violent and aggressive but sweet and beautiful. Emmett is EASILY the MOST DIFFICULT challenge I have ever faced….
My wife and I have been walking this journey for 10 years together so far. I have become an expert (as much as possible) on my children’s disorders….and yes they are disorders. So I do have some knowledge and experience in this area.
Autism Awareness in it’s current form
There has been a lot of debate over whether or not Autism Awareness is effective. I would argue that currently it’s not effective but not for the reasons people think. Many people will say that society just doesn’t care. While that may be partially true I don’t think that’s the problem.. There is a fracture within the Autism community itself.
We have parent’s with Aspergers kids (like myself) saying things like “Autism does not define my child”. Then we have parents of much lower functioning kids (again like myself) that don’t say much at all because we are just to exhausted, beaten down and demoralized..
Now, I’m going to say this knowing full well how it’s going to sound but I think it needs to be discussed.
Raising a child with Aspergers (again which I’m personally doing) while not without it’s challenges, isn’t even remotely similar to raising a truly non/pre-verbal Autistic child. You have to understand that there is a huge difference.
Again, I can say this as I am personally doing both. I have NO experience in raising a truly non-verbal Autistic child and I can’t even imagine how difficult that is.
This is the problem in my opinion. All we really ever hear are the “fluff” pieces about Aspergers from parents and large organizations. Honestly, they aren’t wrong because many of these kids will grow up to be successful or at least independent and God bless them for that. However, the problem is these examples become the public image for Autism and these parents its voice. It just doesn’t portray Autism in an accurate light and it sends the a less then accurate message.
Truly low functioning Autistic kids and their parents don’t share the same positive experiences or hope for the future. From personal experience I can tell you how demoralizing it is for me to hear people say things like “Autism doesn’t define who my child is” or something similar. The truth is, that maybe for them it doesn’t but walk a mile in my shoes (or anyone else who’s dealing with low functioning Autism) and you’ll likely walk away singing a different tune.
I mean no disrespect by this at all. I just see things from both sides. For my part, I assumed that the experience I gained raising Gavin and Elliott would prepare me for Emmett but I couldn’t have been more wrong… I could not believe how infinitely more difficult it was with Emmett and that’s after 9 years of raising Gavin, who breaks the mold in just about all areas. Honestly, it’s a night and day difference.
How can we expect Autism Awareness?
How can we as members of the Autism community ever expect the world to understand when we can’t even be on the same page ourselves. We preach to the world that every Autistic child is different and that’s very true. However, these words become empty if we fail to apply them within our own Autism community. As parents we make the mistake of generalizing things much the same way our kids do.
We generalize our experience with Autism and its impact on the family and transpose that across the board. In other words, we assume that other peoples experience mirrors that of our own. That’s a very dangerous and damaging assumption……. If we are making that mistake how can we expect the rest of the world to be any different?
The follow up to Why Autism Awareness is broken can be found here: How we can fix Autism Awareness
If you are interested in increasing your awareness about autism, consider the numerous behavior analysis graduate programs available online.
Thank you so much for posting this! I feel the exact same way…
Exactly how I feel too Jenn50
I love this and I agree! Thank you for being our true voice!!!
I have a 3 year old son who is probably on the higher end of the spectrum. There is good and bad with this. The good is that my son is verbal and does have meaningful speech, that he is of normal cognitive levels, that he is affectionate with my husband and I and does interact with us. He’s showing signs of hyperlexia and starting to read simple words.
But we struggle with echolalia and scripted speech on top of the meaningful speech. A lot of his echolalia is delayed so we may think he’s saying something cute and original but it’s really just a quote he heard. He also has the talent of saying things in whatever tone of voice he heard them in. He reminds me of a tape player. We also are nowhere near potty trained and are dealing with poop smearing. He never gives eye contact and struggles with having a conversation the way a normal preschooler will. He is struggling to interact with other children and not making friends the way other children his age are starting to. He goes to daycare and then a part day special education preschool program.
He has an IEP because the school district recognizes his delays in gross motor, social skills, and adaptive behavior. Yet because he tested well above average for cognitive skills I get rude comments from my mother in law that I am holding him back and that he doesn’t belong in special ed because he is smart. I don’t think she gets that smart is not enough. I am scared my son will never do well as an adult if he can’t learn social skills like eye contact, interacting with his peers and having a two sided conversation. He is almost 3 and a half and is strugging with following a two step direction. He has never once asked me “why”.
His sensory issues are a daily struggle. He sees a private OT once a week which helps but he still struggles. Haircuts are a night mare. I finally starting cutting his hair myself with him cuddling me on our kitchen floor because he hates going to a salon. Then there’s the poop smearing which his OT thinks may be a sensory issue but I just don’t know anymore.
Elopement and darting off have become a huge issue. We’ve debated using a toddler harness with him because he had gotten away before. He is smart yes but he has no danger awareness whatsoever. He is also not afraid of strangers and will say hi to anyone. He doesn’t seem to get no matter how many times we explain to him that its unsafe that he can’t dart out into a road. We have to keep a tight rein on him unless he’s in a stroller or shopping cart when we are out. He has escaped every car seat we’ve tried. He now has a merritt roosevelt special needs seat and we are struggling with that.
At this point his therapists, teachers, daycare provider, primary care doctor and us have accepted his is on the autism spectrum. Developmental pediatrician spent 20 minutes with him after a several month long wait and decided not to diagnose or evaluated solely because my son interacted and had language and he felt only low functioning kids had autism. Fortunately we get all the services we need without the diagnosis.
i am of a feeling there has to be balance regained in the autism community not clan warefare between neighbours on the spectrum its like its becoming us against them or him against her or group against group who is teaching this hate for fellow autistic people and their famillies…..
Thank you 🙂
Rob always gives an honest heartfelt blog on the lives on a family dealing with autism, we cannot sweep the words under the carpet
Rob, this is very well put. I am in similar shoes to yours. I am the mother of two boys with autism, ages 18 and 22. One is very high functioning, and the younger is not. They are as different as the night is from the day and each has really, and I mean really, difficult but different challenges. They are, of course, older now, but this has not really eased any of the difficulties. As I’m sure you know the supports are less and less as our children age. I really do appreciate your comments.
Personally, as far as autism awareness goes, I am of a different mind than most. I do not think people are ever going to really “get” what goes on with our families unless they do step into our shoes for some reason. My approach is a bit different. For many years, I have been concerned that the world is not a nice place for people with autism, and I wondered how we can get it to change. I would like to teach young children what autism is and what aspergers is with the message being “acceptance.” That’s all — just teach kids from a young age that different is not bad. It’s ok.
LaurieMurdock very well said… Very well said.. 🙂
I really do understand what you are saying, Rob. I have a 7 yo boy who is hfa, like Aspbergers but was language delayed and is socially withdrawn, really obsessive. It’s not easy, and I’m aware of it at all times…but nothing compared to th struggles of a close friend w a severely autistic son…I feel a lot of sympathy for her, for him, no hope of independence ever.
The problem with high-functioning autism is, if you are “lucky” (I don’t know if this is so luck this is why I put the ” “) you get a job. You may get a higer-qualification-job even, one for which you have all the papers (like masters degree or whatever) but you are not actually able to do that job because you have autism. Or it takes all youre energy to do the job, so that you have no life besides that job. E.G. I have a 50% job (I get paid for 50%), but I actually work much more. That is normal in my field. But for me I even work much more than all my collegues because I find it so hard to do phonecalls and so one. And I do stupid mistakes and then I have to correct them which takes a lot of time. So I have been working the last 3 weekends. And for the last 2 month nearly every day 11 to 12 hours… which causes me to make more and more mistakes.
Do you understand how I mean this? I mean, I am very glad I am able to speak. But now I have a job which is to complicated for me. At least some parts. I tried to start a blog myself for some explanations because I always find it so hard to explain something so that someone else can understand: http://autisticneuroscientist.blogspot.com/ I hope it is ok to post. If not just delete.
(Sorry I hope I did everything correct. I thought I posted yesterday but this answer-box is still open?)
Rob, very interesting. I have different issues in my house, two adopted daughters with PTSD, a teenage daughter with bipolar and ADHD who has zero impulse control when not on meds, and my 9 year old son who was recently diagnosed with Aspergers/bipolar/intermittent explosive disorder. I would not want to decide which issue is the hardest to manage, and neither would I want to say someone has it harder or easier than me. I can sympathize with the difficulties any parent may deal with. I always thought, and even now that my son has been diagnosed, one thing more difficult for a child with Aspergers rather than on the lower end of the spectrum is that they KNOW they are different. They want friends but don't know how to get them or keep them if they get one, for example. My son sees his sister with alot of friends and believes everyone must hate him since he doesn't have any friends. He has talked about suicide since he was 4 years old (every sadness he feels is felt to the extreme level). He has a strong belief in God, which is something he has done on his own. I am a non-practicing Catholic. I use his belief, the knowledge that he will not get into heaven if he commits suicide is the thing that stopped him from considering it last week when his one friend, the first he has ever had, didn't want to play for a few days. I also agree with the person who wrote below, since my son doesn't have any outward signs of a diagnosis, people do not understand and have little patience when his behaviors are showing. One of my daughters with PTSD used to go into 2 hour long rages and still cannot go into a grocery store without completely shutting down, dropping on the ground unable to get up or walk. They each have their behaviors, and they each have their strengths. I find alot of comfort in the Autism facebook group I joined. I find comfort in the fact that they have difficult times with their kids, but still love them. And that reaching out to others with problems helps one feel not so alone. So while some of parents on the site have non-verbal kids with aggression, my son who is verbal and has aggression, I can still feel understood. I appreciate your post as well. Only saying what we really feel can make us feel more free. I feel bad for the parents decades ago, even years ago, that didn't have groups that they can find similarities and comfort in. I appreciate your post for what you say, and because it gets others to speak openly about their feelings without feeling judged. Blessings to you and your family.
@Tammi wow. You are one amazing person. I truly appreciate you sharing that piece of your life.
Out of curiosity, what Facebook group were you talking about.
Don't forget my Autism Help Forum as well. I just had to rebuild it when I moved servers. We are slowly moving forward once again.
@lostandtired @Tammi It is just under the heading 'Autism'. Thanks for the compliment. 🙂 I am glad there are places to talk about the behaviors and issues. If I bring any of the harder stuff up with parents of "normal" kids, they seems shocked by what I deal with. That isn't what I want, I want to be able to vent, or discuss, or question, with others that understand. I will look up your forum also. thanks!
@lostandtired
Rob, My friend. Once you decide to put it out there, you put it way out. I agree completely, though like you each of my spectrum kids are unique, I can't pretend to know what someone whose child is non-verbal goes through each and every day. I applaud them for putting one foot in front of the other each day. On the other hand, like you, each of my spectrum kids has their talents. Tanner's talent is learning. If he wants to, and is interested in the subject. As an 8th grade student he performs at a level of a senior in high school on most tests. On the other hand, he is severely limited socially, and has poor grooming habits. then we have Marc. Marc, the child very few wanted. Who is a functioning child with Autism. But also has borderline personality disorder, a traumatic brain injury, a diagnosed kleptomaniac, with ADHD severe type, obsessive compulsive disorder, oppositional defiant disorder, as well as other things that aren't diagnosed yet. He knows no empathy, he knows no remorse. He understands one thing. If you like or love him, he will hurt you. either verbally, or physically. He will steal from anyone, anywhere and does it with a practiced eye that indicates he is casing each and every place he goes to, just to see what he can take. Thank you Rob for putting it out there so bravely, in words that most of us are two shy to talk about.
@Carlyoung thanks Carl 🙂
Thank you, Rob, for once again putting it out there. Our son is nonverbal and we live every day with what the future holds for him. We were lucky that the red flags came up early and he was in Early On before he was three months old. He had infant toddler teaching through our school district. He had physical therapy and occupational therapy, and later speech therapy. He will parrot words on very rare occasions, but doesn't initiate speech on his own. He's come a very long way from the baby born as an undiagnosed twin who would not survive, or "on the slight chance he did survive would be in a vegetative state". Matt runs and plays, he climbs and swims, and can use an iPad to communicate with the Proloquo2Go program, but his judgement is impaired and keeping him safe is always an issue. It is definitely a spectrum disorder and the spectrum is very large. He's also extremely stubborn and his emotions are pretty basic. While he he does seem to have a sense of pride when he accomplishes something or believes he's helped in some way (we've lost a lot of our Corelleware because he threw them in the trash because that's what he's seen us do with paper plates. But trying to quiet him down during a meltdown because "people are staring" is useless. He doesn't seem to feel embarrassment or shame. I get tired of the myths out there about autistic children. There is the idea that every child has some savant quality. They assume he doesn't like people or want to be touched. For him, the opposite is true. That's not the case with all kids with autism. He doesn't mind loud noises, but some do. He likes routine, but he also likes things to be new and different just like most people do. The autism awareness is good in that people are at least starting to become aware of it, but there is a long way to go in educating people that you can't pigeonhole autistic kids any more than you can do that with other children. It is a spectrum and their abilities, disorders, and quirks vary as much as other people.
Thank you very much. 🙂
I have two boys on the spectrum-one with autism, one with Aspergers and then I have another 2 yr old son that is typically developing. The older boys were non verbal until around 4. We were told they would never look at us or talk. It is still amazing to me that they have come as far as they have. I do understand the fracture you are speaking of though. I am the Director of Ocala Autism Support Network and work with over 120 families. We are locally working to bridge that gap and I think we are doing a pretty good job but this is just in our small town. I think getting families together and seeing that there are more similarities than differences is the key. It is a long road but I think that in time with a lot of work it is possible. Thank you for sharing your story.
Hi, I have a high functioning/pda son and although he has a very high iq is unable to mix or tolerate being around more than 1 person at the same time, his pda has meant that he is unteachable, so has never attended school and trying to make any demands on him results in screaming and meltdowns, usually leading to violence, I don't see my sons future as bright, I just hope and pray that he can be kept out of prison or a secure unit, it is so difficult to have such an intelligent boy in one way, but who lacks in emotional intelligence so much. He is chatting away about the latest novel he has read one minute, but something like misuse of a word (in his eyes) and he's punching you in the head, I have had other parents of low functioning and non verbal kids say rather you than me, they say at least their kids don't shout abuse and insult people and that it is more obvious to outside eyes that they have something going on. Its difficult for all in different ways I suppose!! thanks for your post btw! 🙂
I agree with Rob's thoughts and am glad he has expressed them here to open up the discussion. His entry here has helped me to better understand the feelings of parents with children all across the spectrum. We do need to pull together as a group to provide the best resources and acceptance for ALL of our children.
I do have one question, though I am merely speaking from my experience. Do any of you ever feel that being High Functioning is difficult as well, in that there is often an increased awareness of your differences and possibly more anxiety? I have a son with Asperger's who is high functioning academically, yet cannot comprehend the social aspects of others at all. He has high levels of anxiety and has tried college (he quit when it came to forced group projects), and is now trying to work part time. But it is a continuous roller coaster ride. He is overwhelmed by the social interactions involved, feels badly about himself when he sees those who knew him from high school and expected so much more of him, and misunderstands others statements or instructions. It is heart breaking to witness.
Thank you for the opportunity to share in this discussion. And I am in no way implying our struggles are any greater than any other family with a child on the spectrum.
@Sue What is the status oF your son now? Could he do college online maybe?
Well, my opinions are usually "unpopular" for a polite way of putting it, but here it goes anyway… 🙂
You're right. My son has Aspergers. He is also gifted. This means that things are a whole lot of "easier" than for my friend, whose daughter is low-functioning.
In some ways.
What my friend doesn't have to deal with that we do – a father who is also ASD (which presents it's own challenges!!!), a mother with a mental illness and physical disability (chronic pain (EDS) and daily migraines and I can tell you – migraines and meltdowns do NOT mix!!!), and now, because he IS high functioning, we have to pull him out of school and homeschool him because he's not coping in the classroom, and though his teacher is awesome, just "doesn't get it" because he just sees a "normal kid". He doesn't see that when he sends my son back to his desk without looking at his work, that my son doesn't understand that the teacher is having a bad day, or is angry with him for using naughty behaviour – he sees a teacher who hates him and his self-esteem cops a thrashing. My friend with her low functioning daughter, doesn't have to listen to her daughter say she just wants to die. Her daughter may be low functioning, but she's relatively happy. She's also in school.
I think the problem isn't that we judge ALL ASD kids as the same – I think the problem is that we don't consider the big picture. We look at low functioning and "assume" – we look at high functioning and "assume". I have an easier time with toileting – no doubt about it. And meltdowns here are usually less than an hour, mostly at home, and only every few days – I know how good I have it there!!!
But I have to homeschool or risk my six year old becoming suicidal. I may get the same funding through FaHCSIA (actually I don't, but I would have, if the numerous people we saw knew anything about 2e kids), however I get no respite (nor does my husband, who has to deal with both of us, which is hard on him when *I* am suicidal). Even with my own issues, Disability Services comes over and assumes everything is fine because everything *looks* fine – when it's really far from it. But unlike toileting issues – our issues are bottled up inside where no one can see them.
So yes, you're right. The two ends of the spectrum aren't anything remotely similar. I get that and agree with it, and quite frankly, people who have an Aspie child who agree with parents of a child with Autism that they "get it", bug the shit out of me too, and I really hope that I've never offended my friend in that way. I don't get what she goes through and I don't get what you go through.
But don't for a minute think that the difference is a case of "easier" or "harder" when it comes to the whole experience. It's not. It's "different". Your two individual children may be "easier" or "harder" but that is the context within the same house – you can't compare one house to another because it's not just the diagnosis, or the behaviours – it's the whole package that needs to be considered.
As for the issue of public perception – well, that's a whole different thing. If it's any consolation, as a person with a mental illness, I get it, because the same thing happens. All vision of people with depression because their goldfish died, and it screws over the rest of us. Problem is that people DO assume that their experience can be transferred to someone else. "You just need to do what I did". Yeah, bite me (them, not you lol). So even though I may have disagreed a little with you – I'm still standing next to you. Because I understand how frustrating it is. And it's an issue that needs to be debated and discussed. Thank you for that 🙂
I see this a lot in ADHD circles as well. High-achieving ADHDers are put forth as the public face. Certainly, ADHD in people of higher intelligence can actually impart gifts of imagination, creativity, and risk taking. But for the majority, it is a significant challenge. I read and re-read this blog, and it has stimulated me to do some reflection. Thank you so much. We need to have these discussion.
Raising a child with Aspergers (again which I’m personally doing) while not without it’s challenges, isn’t even remotely similar to raising a truly non/pre-verbal Autistic child. You have to understand that there is a huge difference.
So true. So true.
Truly low functioning Autistic kids and their parents don’t share the same positive experiences or hope for the future. From personal experience I can tell you how demoralizing it is for me to hear people say things like “Autism doesn’t define who my child is” or something similar. The truth is, that maybe for them it doesn’t but walk a mile in my shoes (or anyone else who’s dealing with low functioning Autism) and you’ll likely walk away singing a different tune.
Very respectfully put. Nicely done.
Thank you. We need more people like you. Your children are very lucky indeed.
– pD
My recent post Extremely Long Overdue Clinical Findings “Impaired Carbohydrate Digestion and Transport and Mucosal Dysbiosis in the Intestines of Children with Autism and Gastrointestinal Disturbances”, and The Swan Song Of A Tragically Overused Autism Canard
Thank you very much. I truly appreciate it. 🙂
I agree with what you're saying about the day to day challenges of low functioning Autism, as nothing could be so wearing as sleep deprivation and an utter lack of communication. However, I want to point out, as the mother of one of those
"easy" high functioning children, the challenge of raising kids like my daughter is that I have to figure out how to make her function in the adult workforce someday. It can be assumed that the low functioning child will need lifelong care, but my daughter HAS to work through this. She will never qualify for the kind of services that the low functioning person will. She HAS to figure out how to use a toilet, because her intelligence dictates her place in life. If you think that just because my daughter is highly intelligent I have great hope for her, you are wrong. I worry for her future every day.
Awareness is being promoted as an either/or thing, that you are *either* accepting your child as they are *or* you are looking for a cure (not accepting it). I don't believe in this battle between the two and you are encouraging it even further. I can't live either life. Autism makes my daughter one of the grooviest people I know. Everyone loves her way of thinking and living. I would never hope to take Autism away from her, but I also can't sit back and accept her as she is… she HAS to be shaped and pushed through the fire or we run of the risk of her ending up on the streets.
Please stop typecasting parents. You say you aren't trying to belittle anyone's experience, but then you do.
Never a truer word has been spoken.
Awesome post. It's true, there are lots of fractures within the autism community, not just in terms of this issue, but a few others as well. I guess it's hard since the whole field of autism and the experiences of the families vary so greatly. It does seem a cop out though that the "faces" of autism that are put out there for the public to see are only of certain higher functioning types.
Thank you for your support 🙂
There are many things that people in the autistic community find to fight about. It's really too bad, because our energy could be so much better expended elsewhere. My 5 year old pre-verbal daughter did not respond to the GFCF diet, but there are many people who believe that it's because I "did it wrong" and treat me like a pariah because I choose not to continue on a difficult path with no benefits for us. I know some people who swear their children made major improvements on the diet, and I am happy for them, and support their choice whole-heartedly. People who tell me that I have to embrace the autism if I fully accept my child lose my attention immediately, because, as I've said before, anyone who sees fecal smearing and delays or inability to communicate and function socially as a "gift" shouldn't be left alone with children, and certainly don't speak for mine. If your type of autism seems like a gift, or an intrinsic part of your child, fantastic. Enjoy. But I knew my daughter BEFORE she became symptomatic, and I've seen how frustrating, painful, and debilitating this disorder is for her. Let's stop fighting and support one another, whether high functioning, low functioning, Aspergers, Autism, GFCF, vaccine-injured or from the "born with it" camp. Families with ASD in their lives have enough to deal with without calling in artillery on each other over our differences.
Amen. Very well said..
From my own observations and experiences within the community, I'm not seeing the fracture as being between parents of "high-functioning" and "low-functioning" kids (hate those terms!). There is a real fracture between those who believe autism is a treatable medical condition and those who don't. My daughter does NOT have Aspergers. She is high-functioning yet very much impacted by autism, and at one point it was suggested we hospitalize her. Still, I say autism does not define her because I see it as any other medical condition. I don't describe her as "autistic." She is so much more than that. On the other hand, we have parents who will call a child an "autist" like it's some kind of badge of honor. There is little urgency on their part for treatment and prevention. They see autism as some kind of quirky personality difference that we should all accept and appreciate. Would be nice, except that all the acceptance in the world isn't going to lessen the suffering of those who are severely impacted by autism. That, in my view, is the true cause of the fracture within the autism community.
You are definitely right about that. I think they are both problems. I would love to think that we could all find common ground but I\’m not holding my breath. All we can do is keep on keeping on.
Thanks for sharing your views. You have a very good point..
I am the mother of a mostly non-verbal 3 year old autistic child. He only says a handful of words and sings "The Wheels on the Bus" or "This Old Man" all the time. He wakes up screaming in the middle of the night and can't tell me what's wrong. I don't know what the future holds for him. I am exhausted as is my husband. We're sick of people telling us how his life will be. How can you know? Pollyanna people mean well, but they just don't get it.
Gina,
I\’m right there with you. I have actually been hear from quite a few autistic adults lately. They give me hope that nothing is ever set in stone. They are like angels bring hope to parents like us who are not sure what the future holds.
They keep telling me anything is possible. Sometimes it\’s hard to have hope but hearing from adult Autistic is truly inspiring and helps me to have hope.
You are 100% right. Thank you for sharing. Hang in there and if I can ever help please let me know..
A very well-written post! I am the mother of a high-functioning Aspie boy; one of his friends is low-functioning. What his parents go through is nothing like my husband and I go through — it is much, much harder and much more 'all-encompassing.'
Thank you for sharing your perspective!
Everything is relative but Autism is so vastly different from person to person that one voice or one example cannot represent the community. Thank you for sharing your view. The community needs more like you. Thank you
Well said – very, very true! We need more complete "autism awareness" in order for the rest of the world to truly understand autism and all of the possible things that word can mean…
Absolutely, Autism is not one size fits all. Everyone is different and so is their experience. 🙂 Thank yoj
As all the others have said above, I couldn't agree more with what you've said. My daily experience with my son (who is highly verbal) is completely different from my friends and their children (who are non-verbal). But we're friends because of the commonality of our overall struggle and we don't give in to the "embrace the autism" mantra, but more of the "embrace the child" mantra. As a community of autism parents, we need to find this higher level connection for us all, or no one will listen to us anymore.
That is a very good point. You are right, at least in my opinion. Thank you for sharing that.
Don't give up on Gavin just yet. People used to tell my parents that I would never be able to live independently. Back then, Aspergers didn't exist as a diagnosis so that is all they were given. They were told I had a "social learning disability" and that I would need to be on social security to be able to live independently. They were wrong. I am still severely autistic, I can't hold a job because I am too high functioning to be obviously autistic and too autistic to function without extensive accommodations no one wants to provide. But I am happily married, have two beautiful (autistic) children, and am living two states away from my parents. I have also contributed to a book on raising autistic kids that has been published in Australia and, hopefully, will be published here in the States eventually.
Gavin's future is far from decided. If I can make it this far, then anything is possible!
Thank you very much. It\’s great to hear from people with your unique insight. It honestly gives me hope for the future.
We will never give up on any of our kids. No one gets let behind…..ever.
Thank you again for sharing your story. You don\’t know how much I needed to hear that right now…
Thank you
Agree with every word !
This is my first trip to your blog, and I want to say two things: I can identify with you and your family, as I have 6 year old triplets all over the spectrum. Each are so completely different, from very high functioning, to low-nonverbal. Second, THANK YOU FOR PUTTING THIS OUT THERE. I agree with you one hundred percent!
First of all, wow. You have your hands full. While mine aren\’t twins they are all in different places. It gives you a unique perspective on things and allows you to see things in ways others can\’t.
It was a assure to meet you. Keep on keeping on. We all need to stick know together. Thanks again
My son has Asperger's Syndrome. When I tell people I often say we are "fortunate" for lack of a better word. I always get a strange look. But, this is exactly what I mean. High functioning autism and low functioning are almost like two different disorders. They are similar by characteristics but also world's apart. Thank you for sharing your thoughts and I most certainly agree. These precious babies are so special and it also takes special people to raise them. Is life hard at times? Absolutely and its okay to say it.
Well said. Very well said.
I hear you. I hate the fracture of our community. I think all any of us want are happy and healthy kids whose lives have meaning and purpose.
Agreed…
i wrote a post back in april on my blog as part of a series in which i detailed my experience at the white house as part of a very diverse group of autism advocates presenting our challenges to members of the administration. at points in or session, there was distinct tension between the advocates in the room – particularly between those who were there to self-advocate and parents there on behalf of their severely disabled children. these people came with very different perspectives and extremely different challenges.
the point that i was desperate to make to the administration that day was one that i think is similar to that which you make here. although autism is one word, there is no one autism. it couldn't have been clearer in that room.
the post is here … http://adiaryofamom.wordpress.com/2011/05/04/a-sp… .. if you'd like to read it in its entirety.
so, with my apologies for such a long comment, i just wanted to say that i couldn't agree more – and have preached a thousand times over – that there is no better way to truly create awareness (and thereby acceptance and compassion) than through each and every one of us telling our own stories.
thank you for sharing your unique perspective.
and thank you for writing your story.
jess @ http://www.adiaryofamom.wordpress.com
Very well said.
I agree. My son has gotten so high functioning that I actually feel guilty within the autism community. I don't wanna say TOO much about how well he is doing because I know how bad it feels to be at a lower functioning state where you don't know where you're going to be in 10 years…or if it's going to be any better. My son was diagnosed HFA but is now, I'd say, more aspie than anything. But there's even harder and easier forms of aspergers.
High and low functioning autism are definitely two different worlds, almost two different disorders, you are so right. I've definitely noticed this too. I definitely feel blessed and wish you all kinds of good things for your son. I'll help spread this around.
I really agree with this as well..I have to say it use to bug the crap out of me when this mother use to compare her very high-functioning son with aspergers to my at the time non-verbal (he would now be considered pre-verbal at 7) 5 y/o son. Her son was speaking functionally, playing group sports, and greeting me when I met him….my son was wiping his BMs on the wall, having a tantrum in the waiting room where we knew eachother from, and not speaking at all…
my moyher sent this to me n im very gratefull 4 that! i very highley respect u n look up 2 u 4 all that ur doing! my son greg is now 7 but was diognosed w/ autism wen he was 21/2….. he was mostley noverbale,he hit himself n still does to this day,always in his own world,had alot of sensory issues,n needed his certain toys(anything w/ wheels)!!!!! but now hes 7 n he is very verbale, unless u r around him constant u wnt knw everything he says , but he has progressed soo much n im so proud of him! now supp. hes not autistic or never has bn they say its cognitive delay, which i dnt really get because all that he was fits autism! i.d.k. i just wntd 2 share my story, u really inspire me just wntd 2 let u knw that,,thanx!
I'm a diagnosed autistic adult (high-functioning). I understand what you are saying completely and agree. The fracture started with the medical industry. Parents are led to believe they should fear this diagnosis and that it will forever be the bane of their existence. The parents are nudged to expect a life that will not be their own, which is the ultimate selfish outlook. That view eliminates consideration of the child who just received the diagnosis. However, it's a fact that the minute a couple makes the decision to have children, it's their responsibility to be the parents, period. Healthy, Down Syndrome, Cerebral Palsy, brain injury, Muscular Dystrophy,… (just to name a few) however that child comes into the world, the parents need to be ready for that challenge. They made the commitment and in many cases it could be for the life of that child, unless, the parents nurture style is radically "outside the box".
The perception about how to best help each other in the Autistic Community will be based on an overall acceptance of each others individual experiences and calling them correctly. I appreciate how you do not leave out that 'other' issues exist along side that of being autistic. This is often left out of the general conversation even within our community and leads many, in the general public, to believe there is a "one size fits all" approach to comforting or dealing with us; caregivers, parents and the autistic alike. Likewise, there are too many powerful autism interest groups and super mega wealthy autism non-profits that control the media messaging. Their only goal is to satisfy their donors and corporate investors, not the autistic community. It's all about making autism pitiful or powerful. There is no focus on the reality stories like my family's or yours. Your voice may be controversial to some, but, not to me. I'm posting this on Twitter.
Buck ☮
very well said…we need more high functioning adults to be a voice,its through you that we as parents learn..i have an 8 yr old classic autistic son that started out non verbal for a long time,he has most speech now,but will be a long time before he can(if ever) explain things like u just did…thank u so very much
+ 10000
This has been my focus ever since beginning in the community, despite my son doing really quite well.
It is also exactly what I have been seeing wrong with autism awareness. People need to stop arguing whether it's a gift or a curse and learn to accept that it is different things to different people.
In reality, it's actually kind of sad that the autism community itself needs to learn this still.. before we can hope to inform others. But as it stands right now, that's just how it is.
My recent post Is Autism a “popular fad diagnosis”?
Well said Stuart
I can totally see what you mean. My son is HF, but I have worked with non-verbal LF people, and although we all face challenges, the challenges faced by those dealing with LF individuals are much greater. And you are right, they are not the "face of Autism" that you see in ads, testimonials, tv shows, etc.
*hugs*
I look forward to reading your "Fixing Autism Awareness" that you have coming soon.
My recent post Food and my ASD child
Thanks Catrina. The second part will be out in a little bit.
I have both, too. Non verbal, developmentally delayed, and high functioning, almost symptomless (thanks to TONS of therapy) Aspergers. Three years apart.
My recent post YES
Thank you for sharing that 🙂