I don't think Aspergers boys get the early intervention that is needed for social skills, at an early age because they can talk. This has such an impact on there lives when they are older. People just think they are bad children, because behavior is what people see, most people don't see the sensory stuff, or the pragmetics problems that these kids have, and they are usually pretty smart, but only about there special interest. I think that is why they don't do as well as pdd kids when they get older.
True!
My little cuz is a perfect example of a late diagnosed aspergers doing extremely well academically but his social pragamatics and knowing social cues/nonverbal or verbal are poor!
I post these comments here not because my friend's and her son's experience is a recipe for how to make a child "indistinuguishable." It's just my obeservation of what happened. Someone else could do the exact same things with and for his or her child with a much less satisfying result. That's because, the most important factor in whether or not a particular child advances to this level is what is innately possible for THAT child. Providing our kids with the appropriate experiences, interventions and parenting only give them a CHANCE. Where their own minds can go with that chance depends on their own personal hard-wiring.
There is one other boy I know who was dx'd with PDD-NOS late -- age 12 -- and he turned out indistinguishable. But, in his case, he barely made the criteria for PDD-NOS and mostly had ADHD issues, which fell away as he progressed through adolescence. The very fact that he was not dx'd at all as on the spectrum until so late is an indication of how mild his issues were to begin with. He is now 19years old, so no ABA was available when he was young, either. He is in college and doing well. Those boys I know who are Dx'd with Asperger Syndrome, as opposed to PDD-NOS or Autism, seem to do worse socially and in practical life skills. I don't know if this is part of the Asperger's prognosis (although it's a fact that MOST Asperger's sufferers don't transition smoothly to Life, at least those are the stats) or if it's a coincidence However, it does seem as though Asperger's kids' social issues are less amenable to change than those of PDD-NOS or high functioning autistic kids who are high enough functioning to be capable of understanding the social issues. They seem to be more successful at learning how to "deal" than many boys with Asperger's are, inspite of sometimes very high IQ's. Their "EQ's" seem to be very, very impaired.
I noticed that Sarah slowly lost her sx over a 2 year period time of intense intervention which didnt even start till age 3...the third year of therapy was completely zoned in on social language and rules. She is indistinguishable on her good days:P
She still has issues with rigidness, and her wants being more important than anybody else's. The biggest change in her personality came between 5-6..it is during this time her language and engaging others kicked in without us prompting her..she had more expressive & spontaneous language and her sense of humor started. She didnt get her first real belly laugh till age 5 from watching America's funniest video:)..we had to tickle her to hear her laugh..now she will bust out laughing all the time. All her aloofness, non-awareness/eye contact , deafness , flat expressions ..ect completely disappeared..not over night but gradually:) She will always be autistic and will always have her own agenda probably but she can tolerate us & peers a whole lot better:P
Shelly....you did not begin until age three? Did I read that right?
Daddy, I am in a similar situation as you. Liam will just be begining EI now and he is 3.5. I wonder if the most apprppriate times for EI have already past and I am too late. I wonder if he will ever get caught up (especially verbally) with his peers. I wonder if I have already done a disservice to him.
So....if you are loooking for company, I can sit and worry with you.
YepperBepper,
Sarah was about 2 years 10 mos. old when ABA started..they didnt do it right away and spent weeks just getting in her space and following her around..Real demands didnt take place till she was 3 years old:)
We did VB/ABA therapy from 9-3 everyday(30 hrs/wk) and speech 2 hours a week tues-thurs for over 3 years. I wished I had known before age 2 something was not right..I would of implemented much then... but had no clue
Don't get discouraged by this, but I would keep up therapy and keep taking him in public places and around children his age.
Daddy,I don't think it's good to get too caught up in the indistinguishable role...it's good to be focused and try everything we can to help our children...but to me I think it would be more of a let down to expect that and not have it happen...we aren't focusing as much on the successes our children have made because we are too worried about how "normal" they look and act.
Don't get me wrong, I would love nothing more than to have Mason live a normal life, but it took me a long time to realize that even if he doesn't...he still has so much to offer to this world! Maybe it's different for me because Mason has more than just autism to deal with.
Your son is doing great...keep up the good work.
The vast majority of kids I know who've gotten all kinds of interventions never got to "indistinuguishable." But the GREAT NEWS is that the sure learned A LOT more than if they hadn't gotten the interventions they got. And the earlier the interventions, the better. Language is a biggie. If you stretched yourselves financially and in other way to get your child the intervention to ensure language --- and it worked -- you've gone a LONG way toward helping him live a very, very happy life. Ask yourself this question. If it turns out that your son is always going to be distringuishable as autistic, would you stop the interventions? Will you love him less? Will you appreciate him less? Will he love YOU less?
Our kids will achieve what they can achieve. With tons of therapy, very few will become indistinguishable (I personally know two out of dozens, and one is literally a genius). HOwever I know tons and tons of kids who are far better off because their parents and their teachers worked as hard as possible to teach them everything they could learn. I think your "target" of indistinugishable is only bad if you'll actually be disappointed in your son if he doesn't achieve that target. Disappointing one's parents by not fulfilling their dreams is a tragedy for the child. Any child.
Well said Tzoya...I am one of the parents that hope for the goal, but the goal if not met will not make my efforts in vain. [QUOTE=tzoya]Ask yourself this question. If it turns out that your son is always going to be distringuishable as autistic, would you stop the interventions? Will you love him less? Will you appreciate him less? Will he love YOU less?
[/QUOTE]
The answers to all questions is a big NO.
And I am not going to give up or do not do my best even if I am sure my dream will not come true. (I am still hopeful). I am even happy if he IS distinguishable from his NT peers as long as he is happy with his life. My concern is the time when he realizes he is different and it will be a hard time for him..
Tzoya
Can you (and others with older ASD children) tell us how did your son face with the reality that he was different? Was it a very difficult time for him?
Daddy
Hiya Daddy.
I don't think you have put any "unreachable" target in front of yourself, but only you can see where your babe is now and only your babe will be able to evidence his internalization of your efforts and his strides forward.
Everyone says about BB these days that he will be "Off the spectrum within the next few years" or that he is on the "cusp." We have had our private ST tell us this, our OT, his naturopath and two of his Special Ed teachers. They have said that they would be hard pressed to dx him as a being on the spectrum! I can see his strengths clearly and see the progress he has made, but these comments are way off the mark. I look at the way he moves-sometimes looking uncomfortable in his skin. I look at the way he flaps his hands. I see him fixate. I see his unbelievable rigidity. His inability to grade his voice or calm down.
Last night he almost went through the roof because I would not get into the bath with him. This was because I was trying to get him to take a shower the night before and tried modeling for him and then finished by taking a bath with him...big mistake! He ended up thinking that this was the way going forward.
We read the same books every night for a month or so until we can change them out.
When we go swimming he tells me the entire time, "Daddy Deep Breaths" and wants me to swim under the water the entire time he is there because he likes that Daddy can hold his breath for a really long time and then starts yelling when I get tired and need to rest...and it is piercing.
So you are asking about the social portion primarily? (there is a method to my rambling here).
We went to a birthday party at the zoo this weekend. He walked into the room where all the kids were and all the kids greeted him with a huge "Hi [BB]." They were genuinely happy to see him! He...really didn't care! We took a seat and watched the show and he did acknowledge a friend or two, but nothing really social. Then He wanted on the Carousel, but got overstimmed really fast and I had to jump off of it with him in my arms before he had a meltdown on it. Then he fixated on the Birthday kid's cake and had to touch the frosting and was totally dissolving before my eyes...so we left and walked around the zoo. No good bye for his peers and when we passed one later we initiated a hello and he said hi too...with a prompt.
We were in Sears yesterday and he was sitting in his stroller with me behind him. He tracked an attendent and when the gentleman passed by BB said, "Hi" totally unsolicited. That was awesome.
Too ALL onlookers...he was an NT kid with some quirks. In fact, he probably just looked NT! He is 3 years old...this is three year old behavior.
I think he will look totally NT within a few years. I have to believe this, but I also know that no matter what he looks like to the outside world...he is not NT. He will never be NT.
So I guess my question to you is...what are you looking for...your son to look NT or...be NT?
Edit: I need to add here that I do believe that many of our children can look totally NT. I believe BB will be "indistinguishable" and we are all working our asses off to make this a reality. Never give up man. You sound totally invested and there will always be a new challenge...every day...every minute. You have obviously devoted yourself. Don't give up on the dream...ever.
Best to you and yours.
Since my son was diagnosed with Autism about 8-9 months ago, under tight financial situation, we started doing anything hoping when he grows up he would be indistinguishable from his NT peers. The fact that he was very young (26 months) gave us a lot of hope.
He has made tremendous progress, changing from a non-verbal kid to the one that has recently started to say 2 words sentences, but still has a lot of visual stims (looking from the corner of his eyes) and although he is more social now, but still prefers to be alone at the daycare. Maybe we had concentrated our effort on his language and forgot the other issues...
Is our dream gradually going away? Have we put an unreachable target in front of us?I have read there has been cases that younger kids who received enough therapy were indistinguishable from their typical classmates. Do you know any of such cases?
Thanks
Daddy
Daddy
I think he is making AMAZING progress !!! Good job
I dont have an answer for you but I dont think the "look indistinguishable" dream is an impossible one - your son is not even 3 and I think its just amazing that he is becoming verbal
I am actually feeling very inspired reading your post as I really have not been focussing on the language at all in the past month or so
Be thankful for the improvements your child has made thus far and keep working. Some people suggest that it's possible to "grow out of it" while others are very dead set against the notion. Every child is different, so there are no hard and fast rules about the course autism will take, but it sounds like you've seen some excellent results and the chances of at least a partial recovery sound good. Don't be disappointed if a 100% miraculous cure doesn't happen, though--learn to see the positives in ASD, because there can be many.Yes I know of three boys personally.Your son has made such great progress in such little time too!!
My son no longer has anything offered to him from the school. He will be starting kindergarden in Aug in a regular class with absolutely no supports. He lost speech, OT, and any special ed services through the school. I still take him to OT privately.
To people that know nothing of Autism or even teachers they see him as indistinguishable. Or to people in public a raging brat..LOL To specialists or myself my son shows a lot of symptoms. I posted a video not to long ago of him and it shows how he has a hard time with questions and how easily frustrated he gets. It also shows him grimicing and vocally stimming (humming).
So I have to agree with Cam here. I think our children will always be ASD...but to some they may look or seem NT.
By what you describe your son really is showing great improvement. I seen the biggest change in Adam between 3 and 5. Between 3-4 was HUGE.
Karrie
Possibly my son - not too sure. He was classic when he was a very small child - spinning things, lining things up, obsessed with wheels, fans, the dryer, echolalia - I mean, we're talking the poster boy for autism red flags - many more red-flag behaviors than my daughters had - but this was when he was very, very young (probably less than two) and he outgrew these behaviors and never had a speach delay, etc. We never thought to get him evaluated when he was exhibiting these behaviors because he always had good language and seemed social enough and connected, very sweet disposition - no problems at all - we didn't know that these behaviors were 'red flags', and since he was hitting all of his milestones (early, in most cases), we thought nothing of them.
It's not clear to me whether the former behaviors were because he is or was on the spectrum or if these habits and mannerisms are just part of the maturation process of some infants - just a phase they go through on their way to developing language and more abstract play - and that the reason that these are seen as 'red flag' behavior is that they are IMMATURE behaviors, and when they're present in an older child, they mean that there's a developmental delay. I'm guessing there's a reason why most infant toys are spinny or blinky - so, this sort of play really could just be immature play, rather than 'atypical', and only noteworthy if it persists past infant/toddler phase - anyone? I'm really not clear on this at all, but if these are ever NORMAL, but immature behaviors that some infants go through, then there's implications for 'early diagnosis' that are pretty obvious, but I digress (even though this whole tangent is a digression :)
Anyway, my son - so, he just turned seven and yeah, he's pretty much indistinguishable. Everyone just thinks he's the nicest, sweetest, kindest, most considerate and personable child. He's just finished first grade and did very well - at or above grade level in all subjects - he's reading and writing chapter books, etc. He's very competetive and loves to run and race - just completed his first 5K race with me a while back and had a ball. He has pals at school and gets along well with all of his same aged cousins and relatives.
He still has some quirks - he's really into video games, especially 'Roller Coaster Tycoon' - which kind of feeds into a semi-obsession he has with Roller Coasters. He's very sensitive and can talk your ear off about whatever he's into at the time, though I think lots of seven year olds are like that. He has over senstive hearing, and would cover his ears up until about a year ago.
I mean, this is all pretty classic autism stuff, it's weird, huh?
But, really, no one - pediatricians, teachers, friends and family have ever had any concerns whatsoever so I'd say that he is indistinguishable at this point.
Fred,
I have learned through Sarah's therapy that the main thing they taught was for her to learn from her environment and model & imitate others..she couldnt do this at all or pick up anything around her. Her language kicked in last year not so much during ABA and speech but moreso after we were done and she was starting to pick up things from her environment..your girls do wonderful in this area..they have pretend skills and amazing imagination. Sarah had terrible fragments in her language when I joined this board and she constantly corrects herself or we model the correct way for her all the time...her grammer now is already tremendously better than just 6 mos. ago and it all had to do with her wanting to speak better and paying attention to others more...she will be 7 in 3 weeks and I swear your girls speak as good or better:) If I was in your shoes I would just allow them freedom to be and model for them all the time. When they are in school they will have many peers to model after and believe me 5&6 year olds dont have perfect grammer whatsoever....maybe a few in the class do but most make mistakes and at this age it doesnt stick out unless they cant be understood at all...remember they are normal kids with slurs/impediments and poor articulation that will be more vulnerable than your girls will. Sarah at 5 had to be prompted to say anything...she was very adversive to expressing herself...I dont think your girls are. I know you are deeply concerned and nothing I say can ease your anxiety but I am pretty confident and assured they are going to knock your socks off with their progress! I wished my dh worried half as much as you...you are a very dedicated dad! ABA is not meant for very high functioning kids that progress without interventions..it is for kids that wont progress very far without it...Your girls are doing amazing!!
Knock on wood and dont worry so much.
BTW -- I asked those questions of you because I KNEW the answer!