This Is What I Mean By “Severe Autism”

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• I can say my son is exactly like Kyle. My son has had an improvement in receptive language as long as I keep the request to a simple two or three words.

  We haven't had success in any "special needs" sporting of social activities. I do say "good job" when my almost 8 year old closes a car door or picks up something that he dropped all by himself. We are having success with toileting of late (thank god 'cause the price of pull ups has skyrocketed) My son doesn't use utensils well. He eats with his hands mostly.

  My son also chews on plastic and I just say, "Don't choke, Bud" We keep his shoes on top of the fridge so he doesn't chew the rubber soles or hide each shoe in a different place.

  I know "severe". There is tons more I could write too.

  Kelly

  • Just to suggest buying some "chewlry", different rubbery things meant for chewing, might help. They work great!

  • Have any of you tried Reflex/Handle exercises they worked great for my Angel and she was very similar on the not understanding language until we started doing these with her at home. Worth a shot.

    http://www.planforlearning.com/plan_handle.html

    If you can get OT and PT to do them to it helps allot with their progress forward. Angel went from like 4 words to 80 in a year. It basically reprograms the motor memory and the exercises help them go back and make up steps they missed so they CAN progress...if they missed steps in learning they have to make them up in order to lay down blocks to learn more with or they never progress. I like it because it works and its not drugs and at first you will have to hand over hand most of the exercises...but as it moves on they learn what they are supposed to be doing and actually start doing it so you can see the progress. SO NEAT...hope some of you try it. She sees Angel once a year for $150 was well worth it for me. She gives you the disk to take home so you do the exercises with your child. That's it. (this works for lots of things not just Autism)

• My son Michael is 10 and you describing Kyle is almost exactly our michael except he is not tolieting independently . we do a lot of ABA therapy but after reading your post I think I'm going to give Michael a test to see if he understands simple commands that he follows when he is being prompted by an adult . sometimes I realize he doesn't understand when I ask him to pick up his shoe and he reaches down and hands me whatever is close to him ....we have never found another child similar to Michael but I think Kyle is close.

  • So funny to read this - my Michael is 10 and almost exactly the same and not toilet trained either. We've been doing ABA since he was 5 1/2. It has helped, but insurance doesn't cover so we've had to slow down tremendously. Life goes on!!! Do love reading your post!

• Yes. I so know what you mean and my son who is about to turn 9 sounds very much like yours. I know what you mean about hearing others say that and you think, no. No, your kid is not like mine. I have Asperger's and another child with 'mild' autism, then we have Beans. He is what Kanner meant by autistic. At conferences the other day I left feeling not understood and somewhat... I don't know what you call it, maybe confused. One of his IEP goals was to follow a 2 step verbal instruction. They said he was. I know he is not. They said if they drop something and call for him to come pick it up he does. Now, don't get me wrong. Coming when his name is called is a new, fantabulous thing that I wondered not long ago if it ever were to happen, and now it has, so I am thrilled enough that he is doing that. However, if he had no context clues, such as seeing something drop, or someone pointing and saying the ABA command give me, or hand me he would not know what you're saying, or at the least be able to carry out the physical act while trying to decipher your words. All that is more than he can do at this time, so for me I left feeling a little irritated that they did not see how they were mis- perceiving his abilities. If I dare say anything, I end up looking like a Negative Nancy who just wants to believe her child cant do anything at all. Not true. I am just seeing what is there and I feel it's doing him no justice to make his actions into something they're not. One of my special interests is Autism Advocacy and above all neurodiversity, but a part of that is seeing him for what he is and meeting him there. Attributing things to him that he is not meaning isn't thinking positively. It's just lying to ourselves and misrepresenting what he IS trying to say to us, because I do believe that he does communicate with us with behavior, but I want to know what he truly means, not what I WANT it to mean. I think I may have a post that I wrote about this on my blog. I will look and share it with you if I find it. You're not alone. There are very few of us, though.

  • As I read all of the replies here, it is obvious that there are many, not just "a few" (as we are often led to believe)and this is just one blog. I have noticed for quite sometime now that the focus is always on "success stories" and the "higher functioning" and the public is, I believe, being given a distorted view of how severely autism affects some individuals and their families and the challenges they all face on a daily basis. My child is 25, (had several years of ABA) and at various times in her life she was said to have mild autism to possibly losing the diagnosis and then moderate autism, high functioning etc. Now at this age we find that, in comparison to the "oh so many" positive stories of progress and breakthroughs and recovery out there and in the media, all the feel good stories about autism, that she is definitely not high functioning. I do believe there are many more out there who are severely affected, we just don't hear about them until a blog like this comes along. I have never liked the phrase, "if you've seen one child with autism, you've seen one child with autism". Would we dare to say the same about cancer? If you've seen one person with cancer, you've seen one person with cancer? The common denominator is that they all have cancer and cancer can be terminal just as autism can be devastating and it can and does affect every aspect of a person's life as well as everyone who loves them. I'm just saying, it does EVERYONE of us a disservice when only the lighter side of any condition or disorder is focused on as has very much been the case for many years now with regard to autism. IMO

  • My son will be 5 next wk and he has autism spectrum disorder......he is slowly getting better he says many many words now but I would say this has all just started in past year......he has been in speech therapy since he was 2 and OT since he was 3 and started a special Ed pre-k at 4 and it helped him so much....needless to say he can say a few 2 word sentences and can follow simple camass very well but others not so well bc he is not comprehending what we are asking and he has just started calling me momma last year and just started saying daddy.....he is a wiz at computers and iPhones .....wii and play station and we find his iPad has been the best learning tool for him bc there are so many free autism apps that help him.....his mobigo has helped alot as well.....we have to keep dead bolt locks on our doors that you can only lock and unlock with key from both sides for his safety bc he loves outside so much he will just open door and wonder off bc he has no fears outside and does not know danger so we keep close eye on him......he is very independent and has Ben potty trained since 2 all on his own and has never wet bed and he has always wore underwear to bed....,he just learned how to pedal his tricycle this past year and is very extremely picky eater.......I love my son and I am so proud of him every day bc each day is a celebration to us! God Bless you all on your journey with Autism bc they are our angels......

  • How is any of that relevant to this post? Odd?

  • It doesn't. Just let it go.

  • I work with Autistic children and adults I also have 2 on the spectrumall be it more able than. Some I work with some incontinent ! (Thank God ours are toilet trrained). I know I am stating the obvious but all persons who have Autism have varying degrees of autism
    And varying degrees of capabilities low function autism medium function autism and high functioning Autism . A pperson whom I work with you have to take to the toilet every 1/ 2 hour or else the person. Will wet themselves but the parents will not have the person in a diaper / nappy they are adult , personally I would put a diaper /nappy on the individual as eventhough we take the person to the bathroom every half hour the individual still has accidents and you then have to change their clothes . This sometimes is impracticle when you are out but the parents even know that their charge has accidents still ignore this fact and just give us spare clothes to change sometimes an accident could happen twice in one day even though you have taken the individual to the toilet some 5 or 10 minutes prior tothe individual having the accident .

    Have kept name and gender private due to confidentialality

• Reading your post reminds me of something I heard early on in my families journey with Autism, "if you have met one kid with Autism, you have met one kid with Autism". This is so true, raising two boys with Autism, we get the comments like, "They both have Autism?... but they are so different". "What did you do with son X because he doesn't do X or have issue X". The "S" in ASD is part most people don't account for or understand. Also, have learned people's definition of mild, moderate, and severe can be drastically different and that is within the "professional" community.

  • Jim, I have two sons with autism and I get this EXACT same thing from people a lot. Interestingly enough, the one who tested most "severe" at the time of diagnosis is the one who now appears least severe. They are just having very different journeys. And honestly, I don't know how to assess my youngest's level of functioning. My elder son would definitely be considered "High functioning" (though, of course, he has some moments where he still has difficulty functioning at all...) My youngest (nearing 6, but not nearing potty training, it seems) has at moments seemed to me to be on the milder end of things and yet, reading about Kyle just now, I'm not always sure if he does truly understand or if he has just figured out the routines...he certainly doesn't converse, or really ask questions, but does have enough language to mostly get his needs met. If only one of his needs was learning to use the potty. :)

  • Jim and Bliss: Very similar here too. Two sons with autism (no other kids but they do have older half-brother wish aspergers). They were considered to be mild to moderate at time of diagnosis. Now, however, oldest is talking, interactive, and toilet trained mostly, and is more mild at this time. Youngest is nonverbal, generally refuses to go near a toilet, but is coping with life by trying to figure out the routine or what it is you want, and far more severe. But like Autism Daddy has said, the context is very important. Even with routines he is very familiar with. This a.m., for example, getting his cereal and doing it hand over hand and he is still not completely sure where the cereal box returns to or the milk, so I know that is not a solid area for him. And yes, people will say, 'are you sure they are both autistic, they are so different!' or 'well if you tried with the youngest what you did with oldest' or similar. Totally agree with wishing he felt toileting was an urgent need as it is for the rest of us! In fact, his teacher (he is currently refusing to go to school) has said that he is capable of doing gradework about three grades ahead of his class, but that his behaviours (and how they deal with them) makes it nearly impossible to focus on academics. Well, we will just have to keep on keeping on. Good luck to you both!

  • I love this blog. I wasn't sure where to jump in so I chose to after this comment, it may not follow suit. My story is a bit different but the struggles are similar. I have a daughter who was typical until she was 5, but due to an unknown brain infection she has multiple disabilities, one being epilepsy and a secondary diagnosis of autism. She is 13, non-verbal, ALWAYS stimming, so much that her hands are often bloody from the constant rubbing on whatever she can find. She also is an undresser (I would love to hear anybodies input into how to deal with that.) She does not make any eye contact, does not interact with anybody, etc. I get a lot of people asking me, " What does she like to do?" This used to be impossible for me to answer, since I had to learn who this "new" child was. I have learned to keep it simple, "she likes to chew on things, she likes to pace, and she likes to eat." I feel very accepted by the autism community. Even though all kids are different, I feel like the people with autistic children are the only people who really get me and my struggles, and who let me share my "ugly" feelings when I need to get it out.

• I can definitely say that your Kyle is more like my son than any other kid with autism that I have met. My son is always the most severe. Always. And his therapists and teachers have noted it. They have to make more adjustments and accommodations for him than any other kid. While other parents are striving for their kids to be "normal," we are striving for him to remain and happy and manageable. All of the things you described above are like my son. I think that your son and my son have a very similar autism. An autism I do not see where we live, and an autism that you do not see where you live. Except in our own sons. So, there are other kids like Kyle. They are just more rare. It is not the common autism, I guess. When people tell me they've worked with kids with autism before, I just want to tell them to throw everything they know out the window, because my son will not be what they expect. He's 5. He was diagnosed at age 2. He tests at a 9-10 month level, but I think in some areas he could be up to 18 months. We have had very little progress in the last 3 years. Just some small, gradual things, but we are happy with those tiny bits of progress. And he's a happy kid. He is not potty-trained yet, and he can't swim or ride a bike, or swing himself on a swing (he has to be pushed, and it's one of his favorite activities). His interests are limited to "The Best of The Wiggles," music toys, food (and this is the major area where our kids differ, because luckily mine is a great eater), tactile/textures, and physical/sensory play (swinging, jumping). He is a wonderful kid, but very severe. Severe like Kyle. If you met my son, you would agree. I don't always comment on your posts, but I read your posts EVERY DAY, and your blogs. I can TOTALLY relate to you and your wife. I totally get everything you say, and understand and love your humor. You are the only parent out there that I feel like I CAN totally relate to. I feel different from all of the other autism families in our area. They are great people, but none of the kids are like my son. Thanks for all of your posts and blogs. Please keep writing, and making me laugh at things that "normal" families would not understand.

  • I also read Autism Dads post when I can and after reading this one and your reply Laura, Jake's Mom I agree completely my little dude Luis age 4 non verbal and with the same struggles as your EXACTLY...to a T. I pray that we can get by day to day and continue trying to help him get to a goal of being as independent as he possibly can as I fear the future if something were to happen to his father or I who would he have to depend on...

• I can also say he's just like my son. And I do mean exactly. I can ask Justin to hand me the remote control when he's right by it, but he will pick up a toy and hand that to me instead. I've just recently come to the same conclusion.....he just doesn't understand what I thought he did. Justin has been diagnosed as severe/classic Autism as well. He also meanders through most days without a true purpose.

• My son Dominic is exactly what you would call as *severe*. He is ten years old now. His receptive language is much better than his expressive but he is still not toilet trained. Still he only knows simple commands like take a bath, time to eat, shut the door. He still refuses utensils, we still have to keep my jewelry up because he likes to chew on it all. Most of his shirt sleeves are from chewing. He wanders aimlessly around. He plays with the same toddler toys in a repetitive manner. He has to have hand over hand for just about any activity. If it isn't jumping on a trampoline or swinging or bouncing on a yoga ball he needs help. He can't throw, catch, dribble etc. Even playgrounds and slides are all things needed with assistance. He refuses to eat certain foods and will not take any kind of medication. He spits them all out. He has had to have foam surgically removed from his nose because he has shoved it up there so far. My son isn't *exactly* like yours, but I do know severe. And if I didn't tell you, he is also completely nonverbal as well. (Oh and his button pushing knows no end! He has broke more televisions than i can count!)

• Hi, I wrote you before about my daughter, same age as Kyle. And literally everything you say is her. To a T. Some days she understands routine things (put on your shoes)... other things like "put on your pants" and she will go wash her hands. Or bring me a cup. Or just start stressing out with a confused look and try and wander away. I know what you mean though, we have never met a kid like her...like ever. In person anyway. Once in a blue moon I will stumble across a post or a blog (like yours!) that sounds like her.
  By the way, your post on potty training gave me hope that Iza could re-learn it again after 3.5 years of pullups and only going #2 on the potty. And she did! WE are back in undies, which is like Christmas at our house! It is obvious that she gets it (for the most part) and is proud of herself too, which is amazing. So thank you for that.

  • The fact that my potty training post worked for you guys almost brings a tear to my eye and makes this whole blogging thing completely worth it!! So thank you!!

• I would never say my son was "exactly" like any other child on or off the spectrum. I do believe that Kyle and Kelly's son from the comment above are very similar to my Brandon though. He may only be almost 6, but I would be elated to know that in a few years he would stop and show that he knows we're asking him to do something unassisted even if he couldn't comprehend what we wanted.

  We're lucky that, even though he isn't potty trained, our insurance pays for pull-ups for him. They go through HDIC and we get a months supply Fed-Ex'd to us each month. In IL, the new rules for this is that the child has to have a developmental delay making potty training difficult, be over 4 years old, and have a pediatrician who is willing to write a prescription for diapers. Something to ask about since a lot of people don't know about diaper programs like this.

  Our latest "Way to Go!" moment was when he suddenly learned how to use a straw this month. Our daughter picked it up at around 13 months of age and he is nearly 6 but we were equally excited for each of them when it happened.

• I always get the "He doesn't look autistic" when people meet my Jacob, but what they don't see is the stemming or the fact that he is 10 1/2 and we mastered wiping ourselves this year and just last week tying shoes, or that his motor skills aren't like other 10 yr olds. He doesn't do alot of things like other kids his age, he acts and sounds younger. But he is his own 'form of autism' even if he constantly reminds me of my brother who does/did alot of the same things and was never diagnosed autistic and is doing remarkable things now (like learning to speak/read/write Russian fluently for his job!). Most importantly he is Jacob, goofy and lovable, and my little Beans :-)