Tzoya & others w/ older Autistic kids | Autism PDD
Strattera has been known to cause problems with kids on the spectrum. Our psychiatrist, who specializes in autism and is widely known as an expert, told me that his experience putting kids on Strattera is that it can work for ADHD in some kids on the spectrum, but his experience has been it works effectively mainly with kids who have more ADHD symptoms and fewer autism symptoms. With tics, it's often problematic to control ADHD. My own son has HUGE issues with Tourette's. Our doctor has told us that Abilify is not as effective with Tourette's as Risperdal. Yes, our son is obese due to the Risperdal. But the fact is that it is the ONLY drug that controls both his tics and his aggression. He has not had a single tic or angry episode in years. Risperdal helps control self-injurious behavior, too. It also helps a bit with hyperactivity. Tenex is a non-stimulant that helps with hyperactivity a bit, too. Tics increase as anxiety increases, as does self-injurious behavior. Our son is on Buspar for anxiety. He gets 6mg/day of Risperdal, 60 mg/day of Buspar and 3mg/day of Tenex. He is 16, over 6'2" and near 300 pounds. His health is good. I have discussed the obesity issue with our psychiatrist. Basically, our choice is to keep him tic-free and aggression-free on Risperdal or take him off and have a slimmer boy who is hospitalized for severe tics (they resemble seizures) and dangerous aggression. The choice comes down to having a fat boy who is happy, learning and totally functional or a slim boy who is put in residential care. That is our stark choice. For us, the extra weight Risperdal causes is nothing compared to the positives it does. If our son were hurting himself, I'd certainly rather see him fat and not self-injurious.
All of our doctors (pediatrician and psychiatrists)seem to be more worried about Dorian’s weight and obsession/addiction to sugar and less concerned about him picking at himself. Dorian will steal candy, ice cream, pop, jelly, syrup, cookie dough, cake mix, frosting, plain sugar, cakes, pies, or any thing sweet. Any time we have sweets around the house, they will disappear- not some – the entire bag or box. When he steals something, he always hides the paper in a dresser drawer, closet, or the same bush beside the house. We have to search his room every day for trash. He will steal from a store if the opportunity presents itself or eat out of the trash can. At school he would beg, intimidate, or bully kids into giving his snacks. He gained 41 pounds in 5 months. He does not have Pratter Willis symdrone.
I will talk to the Doctor about the medicines you use.
Connor stood out the most between the ages of 8-10. Learning disabilities became apparent, along with a school that refused to accommodate him appropriately. This triggered autistic behaviors in him that I had never seen before. He totally shut down at school. He became obsessed with glue as a stress reliever, and would sit and peel the glue off the bottle, and refuse to do any work. Or he would just sit and snap pencils in half. This was also the time that he was pulling out his hair and eyelashes. Oh, God, my stomach hurts just thinking about it
This was all caused by his inability to access the school curriculum. One lawsuit, appropriate placement and a lot of therapy later, at almost 13, he is pretty much indistinguishable from NT kids. He's definitely quirky, and a touch on the goofy side, but if you didn't know, you wouldn't know, if you know what I mean
I have been on vacation, and funny this topic should come up, because we had an eye opening experience with Adam this past week. He is 12 1/2 also, and he definetly does not fit-in as much as he did when he was younger. I am not sure if he is actually worse, or if people are less understanding and expect more as he gets older. His language processing stands out, as well as he ridgity of the rules and expressing them to others. He does walk kind of funny, and people notice that also. He touches his brothers at odd times, and also when he has an itch he hits it because scratching actually hurts him.
So this past week, we had people stare, and also make some very rude comments to him. My husband actually said something back to someone. It was the first time that we experienced that many people reacting to Adam in a negative way. Several people actually backed away from him. I cried everynight when we went back to the hotel.
I am not sure if he was being "more autistic" because he was on vacation and out of his routine, or if people are just not as accepting of an older child. Or if I am used to the people around me. But it was a very hard week for all of us.
Well, I've only known Donny since he was 6 1/2, my husband's known himsince he was 5. I'd have to say that, on a whole, he stands out less in
general. While the gap between Donny and his peers has widened, and
his adaptive functioning reflects that (his adaptive IQ has decreased
dramatically over the past six years, as what he's expected to be able to
do has increased), his autistic behaviours and tendencies have decreased
so that he does not stand out so much. For example, far less stimming,
more appropriate greetings, better eye contact, can answer simple closed
questions, follows direction, natural facial expression, typical interests,
and so on.
A good example of this was just this evening, Donny and his Dad went to
Superstore to pick up some groceries. Donny's interactions with his dad
were all appropriate, and nobody would realize he had autism unless they
tried speaking directly to him, and even then, if it was just a quick "hello
young fella", they wouldn't pick up on it. Donny had a natural posture,
even sticking one hand in his pocket and shuffling along the way ten-
year-olds do
I think Tony is a mixed bag... in some ways he stands out more now at 12-1/2, in other ways, less.
On the lesser side, he has less inappropriate behaviors, and less frequently at least in public. He does walk a bit funny, and runs even more so, but the way kids his age strut and slouch, it does not stand out. So to see him in public... say shopping at Walmart, or at a ball game, he would not stand out as different.
On the "more" side, his language processing delays stand out just about as soon as he says something. My 10 yr old is quickly passing Tony up in verbal interaction and the like. But in that regard, most of the time he just seems "slow" as we old-timers used to call it. On another hand, his obvious naivete (sp?) also speaks "different". And he is still very quick to cry (or at least tear up) when he is upset about the least little thing. So the ultra-emotional or sensitivity, at almost teenage, is more socially unacceptable than at say, 6 or 7.
Mary
Great question!!!! I am also super interested!!!! I am bumping it up!!!I am wondering how severely your children were affected when they were younger, and how their symptoms changed as they grew (if this is not too personal)
For instance my friends has a 12 yo son w/ Aspergers. As a little guy, between 5-8 yo, he seemed like any other kid, maybe a little bit too much into his trains. Otherwise, he seemed like a NT kid. But now at 12, he really stands out as different. He stands very close when talking, goes on and on about sailing, walks around humming to himslef a lot and prefers to be alone with his computer or special intrest. A few learning difficulties have also been noticed in the past few years.
So I am just wondering how kids change as they age, if they tend to stand out more or less?
It may be changed bye the maturity level of the kids hes with and the peer pressure as when your younger it may be harder too notice they have autism as they get older the more hareder school and words get the harder fitting in get and all that pressure makes autism stand out! the opposite of what shewinders said!
My son seemed to be more autistic when he was younger. He would make no eye contact, had very few words, most of the ones he had were echolalia and he was EXTREMELY noise sensitive. He was dx'd as moderate to severe autism at the age of 2.5. He would probably be re'dxd as HFA or aspergers now. He is 12. Your friends son sounds a lot like mine. Yes hormones have added to the frustration and we see a little more anger issues. Nothing big. We had a bit of a spat a couple of nights ago and he grabbed my arm and squeezed. Not too tight but i calmly asked him if he really thought hurting me would make things better. He immediately started crying and apologizing. I remember my nephews(not autistic but add) doing something similiar to their mom(twins, aghh).
The one thing is they DO stand out more. As mentioned in previous post those things that seem cute are not anymore. I am lucky. Most of the time Shawn does ok. But there are times that the other kids look at him funny I feel crushed for him.
I have stood out more with time rather than less. Combination of actual loss of abilities, and abilities staying the same but demands increasing, and things that look normal or cute in kids being considered less normal and cute the older I got.gtto is so right...at a young age kids are cute, and even though there are demands,the demands grow as the children grow, and the "cute" goes away. The less us not forget puberty..things change, just like with NT hormones go crazy even "normal" teenagers are yucky..but at least they have a way to channel the rages that come,i.e. football,wrestling.My son is 19 and I can say his behaviors changed at the age of about 12-13.
Also like all teenagers, mothers are an embarassment..remember????no different for the autistic teenager..they just will show you in a different way,depending on language,etc.
It is awful, I was told by one of my sons teachers that they do mellow out...like everyone esle, but not until about 22-25 years old...God help me..I have 5 years left...[QUOTE=c3dburton]
Dorian definitely stands out more with age. He is a big kid with odd and awkward motions – scratching, biting, twisting, frowning, blinking, etc. He was diagnosed with ADHD at age 5, (basically all Boy) and them Autism in second grade (developed noticeable stims and self injurious behavior). Dorian is in a regular class with an aide. He will start high school in Aug. He still struggles with self control and has few friends.
Between grades 2-5, Dorian had a few school friend and even got invited to birthday parties. In middle school, even fewer friends, and NO invites to any non-school functions. Even the neighborhood kids stopped coming by.
No one thinks anything of a 5 yr old moving and playing in church. A 14 year old that is 6’ 200 pounds and scratching, coughing, biting, and twisting is difficult to ignore, no matter how far you sit from people.
This year has been extremely difficult. Dorian has had to be hospitalized. Had his thumb broken by police, suspended from school numerous times, and isolated at school. At restaurants, we have had people get up and request a new table. Friends come up and ask me what’s wrong with Dorian, why is he frowning. They might say hi to him at the most. An adult told my DD that Dorian was not worth speaking to. Last week we were at a church 4th of July celebration. When a new person was introduced to us, he shook me and my DH’s hand. He took one look at Dorian and said, I’ll pass on shaking your hand. He has sores on his wrist from biting himself.
I see two things happening – Dorian standing out more and people avoiding him more.
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Oh, geez. People can be so bloody awful! I'm so sorry your Dorian gets treated this way, and you all as well. It's just not right.
What was that link to some other site that was going to feature success stories of older autistic folks? Barrie someone was doing it? It is just discusting how people treat others who are different! It really makes my blood boil!!!! As far as Connor was concerned "placement" meant finding the best school that could best serve him both academically and behaviorally within our public school system. I, too, was fighting the school he was at (a Magnet school, not our resident school). Connor was dx'd in 2nd grade, so that was when my learning curve began as far as educating myself about autism, learning disabilities, ADHD, and how they all effected my son's academic, behavioral and social needs. By 4th grade I knew I needed to move him out of the school he was at, so I started doing research and leg work about all the public schools in my area. I talked to people I trusted (teachers, speech therapists, etc.), as well as other parents (your best resource), and visited schools, and talked to Prinicipals. Turns out the best placement was right under my nose, 2 blocks away! The right school will work with you to create the best program for your child, whether that is full inclusion, or full mainstream, like my son. When it came time to think about middle school, they helped me once again find the best placement, and supported my decision with the district (I chose a non-resident school, so I needed district approval) at the transitional IEP. Now he is about to start 8th grade, and I'm already hitting the pavement in search of the best high school for him. Bottom line: As far as placement goes, talk to everybody you know and trust, then go and look at the schools, talk to the Principals, look at the special ed classes and talk to the special ed teachers, and then go with your gut. You know your child better than anyone. Find a school where you can trust in the teachers, but that also welcomes your input as well.Dorian definitely stands out more with age. He is a big kid with odd and awkward motions – scratching, biting, twisting, frowning, blinking, etc. He was diagnosed with ADHD at age 5, (basically all Boy) and them Autism in second grade (developed noticeable stims and self injurious behavior). Dorian is in a regular class with an aide. He will start high school in Aug. He still struggles with self control and has few friends.
Between grades 2-5, Dorian had a few school friend and even got invited to birthday parties. In middle school, even fewer friends, and NO invites to any non-school functions. Even the neighborhood kids stopped coming by.
No one thinks anything of a 5 yr old moving and playing in church. A 14 year old that is 6’ 200 pounds and scratching, coughing, biting, and twisting is difficult to ignore, no matter how far you sit from people.
This year has been extremely difficult. Dorian has had to be hospitalized. Had his thumb broken by police, suspended from school numerous times, and isolated at school. At restaurants, we have had people get up and request a new table. Friends come up and ask me what’s wrong with Dorian, why is he frowning. They might say hi to him at the most. An adult told my DD that Dorian was not worth speaking to. Last week we were at a church 4th of July celebration. When a new person was introduced to us, he shook me and my DH’s hand. He took one look at Dorian and said, I’ll pass on shaking your hand. He has sores on his wrist from biting himself.
I see two things happening – Dorian standing out more and people avoiding him more.
[QUOTE=tzoya]Evie -- If Dorian was hospitalized, couldn't the doctors do something about his self-injurious behavior? At his age, the hormones definitely exacerbate autistic tendencies. Many kids become aggressive due to testosterone surges (the hormone of aggression). At your son's size, it's understandable why other would be frightened. I know because my 16yo is 6'2" and nearly 300 muscular pounds (he's a swimmer). Just STANDING there scares people. For self-injurious behavior, you'd think they doctors could have gotten one of the atypical neuroleptics to work. I feel so bad for your son. Not because he is ostracized (that's bad enough) but because what must be going on in his brain to cause him to bite himself to relieve the stress. Please see if there can be some different medical intervention that would work better. Or perhaps a more restrictive environment that would cause him less stress. We withdrew our son from Middle School at the end of 7th grade an put him in a public school especially for developmentally delayed kids. His demeanor changed dramatically for the better. Public MS and HS are not easy places for anyone to be, much less kids with significant autism issues. See if the IEP Team and/or the doctors can do a better job. (((HUGS)))
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I think you meant for this to go to c3dburton, tzoya.
Good advice, though, I think.
Oh yes, you're right. Guess I was reading c3dburton's quote under Evie's post. Of course, I hope this thread is read by anyone in a similar position.We’ve tried Respidal and Abilify. They get the vocal tics under control but not the biting. The doctor switched form Respidal to Abilify because of the weight gain. Dorian is on Strattera, Prozac, Abilify and Adderall. ANYTIME he is not engaged in drawing, talking, moving, or watching TV, he bites himself. We put heavy duty band aides on the sores, but he always removes them.
He normally bites the left hand, but it is in a cast due to the broken thumb. So now he has switched to the right wrist. When the biting subsides he pulls his eyelashes, eyebrow, and hair out. Then he might switch to biting his lip or picking at his face. 80% of his self injurious behavior is biting his hands/wrist.
I am amazed that you can say Strattera has a bad reputation for autistic people, but overlook the fact that neuroleptics as a class of drugs (despite a handful of autistic people liking them) have a far worse reputation for autistic people. (And I don't mean obesity.)
I don't think people should be biased by the drugs they take, or give their children, in this manner. I take Prednisone right now. It's very useful to me. This is because I have a life-threatening condition. It is also a very dangerous drug that's only supposed to be given for life-threatening conditions and only for short durations wherever possible. They are talking about giving it to autistic children "to make them talk better" without a shred of evidence it actually does so. The fact that I currently take Prednisone successfully (for asthma) should not in any way predispose me to recommend it for anything without massive massive massive qualifications, or to say that it is okay to experiment on autistic children with (it is definitely not okay to do this).
It is reckless to recommend either neuroleptics or Prednisone without massive amounts of warnings about far more than obesity (in the case of neuroleptics) or mood changes (in the case of Prednisone). Prednisone is a powerful and dangerous steroid. Neuroleptics are powerful and dangerous drugs for which the name ("neuroleptic" means "nerve-seizing") should tell people a lot. They can and do routinely cause permanent damage. They are more dangerous in people with the sort of movement disorder I have, a movement disorder that is more common in autistic people.
It should scare people out of their wits to put someone on Prednisone (even for good reason, such as severe asthma). It should also scare people out of their wits to put someone on neuroleptics (even for good reason, such as uncontrolled nausea). Anything less than that amount of respect for these drugs is irresponsible, and that goes for even when the drugs are absolutely and indisputably necessary. People should not post about (real or purported) beneficial effects of these things without massive cautions attached -- massive for neuroleptics, even more massive for steroids like Prednisone. These are not aspirin we're dealing with here.
Nicholas shows up more now than he did as a child.
Nicholas as a young child presented as if he had only a language delay.
At almost 17, he has a very very small group of friends. He strugles to maintain a conversation over a long period of time. He finds abstract thoughts hard to process. He still strugles with lots of social aspects. His diet is very narrow.
In saying all that, he is a very happy young man and does present very well. At worst people might think he has 'weird' ideas and behaviours - at best they will think he is shy.
Mysh
I have always thought that people notice that my boys are a little different, but thats all. But, recently I have thought people must notice that something is "wrong" because a woman approached me out in public and was telling me that the local boy scouts are a great way for kids to socialize and they do have other special needs kids' in this group. It shocked me that she said this because I guess I myself do not pay attention to what or how other people respond to my kids. I guess people do realize there is something different. I would also guess that it stands out more now that they are older because they are bigger and expected to know how to react and respond in social situations such as at the store, at the Dr....etc. Billy and Chris are constantly rocking, even when not in a rocking chair. Chris is always side to side Billy is forward and back. Billy also flicks his fingers a lot and plays with his hands, esp. when nervous. I guess this is interesting to me because I never thought about people looking at my kids differently than NT kids. New concept for me.Mysh,
I may have said this before, but your descriptions of Nicholas remind me a lot of my oldest son, Paul. He will be 20 in a few weeks and has only been officially dx mild ADD and gifted. I would not be surprised if he is one of those undiagnosed aspies out there.
Paul did not have any language delays; in fact he was an early talker (pretty fluently, too). But he was my first, so I chalked that up to the "new mom" intense interaction we had in his early months. He went through the eval process about a year before Tony did for the autism dx.
I think the "gifted" dx is what has masked any other dx. Paul has always said he didn't think he was ADD, and he has done plenty of reading on the subject. But he is at an age and stage of his life that it would be fruitless for me to suggest evaluating for Aspergers.
He is very musically inclined, and is quite dedicated to the rigors of competitive drum and bugle corps. He is currently in his 5th summer of competition. Yet he struggles socially, outside his circle of friends. It truly pains him to initiate conversations, even by phone, with strangers (beyond ordering at McDonalds). And he will totally avoid confrontations any way he can.
I know this is speculation on my part, but if Aspie he is, or not, I would say Paul presents more affected with age. I have already commented on my known autie, Tony.
Mary
Gtto -- Clearly, your experience was different than our son's. I commented based on both my experience with our son and about the answer I got when I asked our son's reknown psychiatrist, who is an expert in autism spectrum disorders, about his experience medicating kids with these drugs. His name is Dr. John Pomeroy, he runs the Cody Center in Port Jefferson, Long Island, which is part of the State University of New York at Stonybrook. He is the first person to say he doesn't have all the answers. If I ask, he will tell me what he has experienced with the hundreds (probably thousands) of children and adolescents he treats (most of whom he's known for years). He is also the first person to say that kids on the autism spectrum often have atypical reactions to all sorts of medications. This is what he told me: He has seen Risperdal work wonders with tons of kids. He's seen Abilify work less well. For ADHD, he's seen Strattera work the best for kids who mainly have problems with ADHD, and fewer autism symptoms. He is VERY, VERY conservative with any medication he prescribes. In fact, I feel that my son went through a very bad year once, in part because Dr. Pomeroy was so reluctant to raise the Risperdal. When it eventually became CLEAR that the med had to be increased, the symptoms disappeared and have stayed away for over 2 years. I am not trying to hawk any particular medication. It is a fact that a very experienced psychiatrist told me these opinions after I asked. It is also a fact that Risperdal is the ONLY medication that is specifically approved for ON LABEL use for symptoms of autism. I know that it has some significant side effects (weight gain in most kids and tardive dyskenesia at higher doses in some kids), but the statistics are in the favor of Risperdal when it comes to stopping many of the more serious symptoms that are seen in the autism population. And it seems to work quite well on serious tics. I know that some kids have very negative reactions to Risperdal, but that is true for any medication. More true for kids with autism than for kids with typical brains. That is why I always suggest that parents take their child to a psychiatrist who specializes in autism if they believe their child needs medication. IMHO, Dr. Pomeroy is not just a scientist, but a true artist when it comes to medication. He seems to be able to combine meds and keep doses quite low and still have positive results. We just went to him yesterday for my son's 3-month check up and I was once again reminded of why I love this doctor so much and how he has helped our family stay a truly happy one. I wish your experience with whatever meds you took in the past had been better. My son actually ASKS for his meds at around the times he's supposed to get them. It's clear he knows they make him feel better.
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