was your child "recovered"? | Autism PDD
Kristy: I lost my bro in a car accident at 36 and never got over it:( So much unfinished business.
Sarah is near recovery and like most would not know a thing expect us parents that know what the quirks in language are about and her lack of social gestures and she is not as animated as peers..she seems much older because she is so calm and most of the kids her age are hyper and all over the place. She does well with directions, academics but will always have issues with expressing her comprehension verbally and making inferences in stories or with people...she still has work to do but she is doing amazing compared from where she started:) She is only 7 and has a whole lifetime to catch up:)
Kristys just got to read all the posts - your brother'sstory is very touching. TY for sharing it.What most people see in their kids as "recovered"--is what my son was and still is. He is very high functioning. He is at grade level, doesn't stim at school(at least not what anyone can notice). All he does at school is his meltdowns. It's about social stuff or someone was following him, or someone was "cutting" in line, etc. He does have speech and I'm sure others can pick up on his language---but there are alot of kids in his school and class that have SLP. He even has friends and loves to play with them at recess (when HE wants to).
My son is alot better then what he was---due to language development and maturity.
Kristys , Thank you so much for sharing your brothers story. I was so moved and inspired by what you wrote. I am sorry for your loss.My son echoed at two. He has a huge vocabulary now and sounds precocious. In truth, he struggles in school. My son's development was strange. Until age four, he seemed delayed, then he leaped ahead of his peers and was considered the "smartest" child in kindergarten. He was also very popular. He loved to run and laugh with the other children and was invited to every party. Around third grade we noticed him struggling in school big time and the other kids started ignoring him. He became "more autistic" again. The older he gets, the more he improves, but he is still very different from his peers. Nobody would think "he's autistic," but if they were around him the way we are, I think they would think SOMETHING is a little off. He doesn't have the same interests nor the same wish to socialize that other teens do, however he has buddies in school. It's hard to explain his differences, but they will certainly affect his ability to function alone as an adult. Hard to explain to those with little ones who are improving so much because I remember those days. Seemed like Mark just went from barely talking to using every word in the vocabulary. ASD is very strange. To me, Jenny McCarthy's little boy has an "autistic" look, but I don't know how to explain that either.(If you are still limping 5 years after the fact, you are not recovered.)
I limp when I am tired. I am definitely recovered.
This is such an intrinsic part of my son's personality, I think it would be impossible to say he recovered. He is not severely affected, so perhaps if he was it would be more clear.
My son had early OT and speech and went to a special preschool, so it is hard to say what he would be like today, if we had not had that help. He was just this way since birth, in utero actually. I think it is easier to see a recovery, if they were a more so called "normal" child, then regressed, then had treatments etc...
For us it is more of a management issue. He stimmed A LOT, for instance, in first grade. He went on Risperdal, and now he barely ever stims. But he is in Spec. Ed. School will never be easy for him. He will always be quiet, he expresses love and affection now, but I'm not sure if it is a natural response to his feelings or learned.
He didn't express affection as a child, so that is progress, but not recovery. He was pervasively delayed, but he learned to talk, walk, etc... so that is progress, but again, he is who he is and in our case at least, I don't think there will ever be a "recovery".
Kristy - your brother's story was very moving. I've read bits and pieces you've written about him before but never knew the whole story.
Anthony, at this time, is midly affected by his autism. He has been getting speech therapy for almost 2 years and ABA for a little over 1 year. He likely would have been in therapy earlier if the ped didn't dismiss our concerns. He has made huge strides in that time.
Do I consider him recovered? Absolutely not. At his most recent visit to the developmental ped, we were told he would likely go to college and hold a job. They said he'll always be a little quirky but should be able to care for himself. As much as I like hearing that, I am cautious to let out the sigh of relief. He is only 5 years old and right NOW he has autism. Who knows how he will progress or if he will progress? So, we will keep up with the therapies. I will continue educating myself, as much as possible, about autism and more importantly Anthony.
Hope, it must be so hard to be raising any child by yourself. Where do you live? My kids are not living paycheck to paycheck, but they certainly aren't rolling in money. Approximately 95% of the money spent on Nate is from early intervention. The only out of pocket expoenses my daughter has is for his GFCF diet and some of his meds. The State of Pennsylvania is doing quite well educating Nate. I wish it were that way for everyone.
Kristy, you've made me sob. I am so sorry to hear about your brother's untimely death. That s*cks. I pray everyday that my precious grandson will have a happy life. I personally know a teenager with asperger's who was a camp counselor this summer. He has always had friends, but he grew up in a very academic community as his dad is a professor at U of P. My daughter also had a colleague when she was working for the marketing department of a large corporation who is an aspie. He did quite well also. All we can do is hope and pray and offer our kids the best opportunities that we can.
Hi guys!
I would not say Nicky (5 y.o. - autism) has recovered, although he has made giant steps forward. After one year of 20-hour-a-week ABA, plus 10 hours a month of speech therapy, plus musictherapy once a week, my son is finally able to communicate, smile and enjoy his surroundings.
He still has serious sensory issues, as far as food goes(he only eats white soft foods), cutting his hair, brushing his teeth and cleaning his ears. I still have to rub him so he can go to sleep at night and only when he does so, can I trim his finger and toe nails.
There are 4 periods of the year (change of seasons - equinoxes, etc..) when I have to use a weighted blanket to calm him enough so he can sleep. Once he does, he will wake up 4 to 5 times a night and call out for me. Full moons also seem to affect him.
We have tried to NGNC diet and found no visible difference in his behaviour / receptibility BUT we did see a difference when we removed lactose from his diet - he is lessa gitated and can actually sit down for about 10 minutes without having to get up. So far, in his 5 years of life, he was able to sit down 3 times to eat his dinner without getting up. We are clearly making progress. Nicky is a hard worker when it comes to his therapy - most of his friends are NT and he wants to be like them. from our end, we put no pressure on him - we let him be.
In the past year, he has taught himself to read and I pushed a bit further with light mathematics as he has always been fascinated by numbers. So now, he can add and multiply but will refuse to substract or divide - must be because I taught him with jelly beans - always wanting more!
We had his IQ tested this Spring (non-verbal) and he tested way above peers his age. So they tested him on another scale and he aced that one too. We are going to see a specialist this autum as they want to investigate further to see how gifted he is.
Being a 5-year-old boy, he likes to scare me by bringing me spiders and whatever bugs he finds in the gardens. He also like to make farting noises. Typical....
Personnally, I do not believe you can really recover from autism, but you can learn to manage it and channel in different manners what is going on inside. To me a recovery is without any visible sequels (to use Jenny's analogy with being hit by a bus - if you break your leg and it heals nicely, you're recovered. If you are still limping 5 years after the fact, you are not recovered.)
We still have ways to go but my son has made giant steps in the past twelve-month. He even says "I love you".
Jo. (mamma to wonder-boy Nicholas, 5 yo, autism)
I remember in college I hung out with this group of students and therewas one boy who was part of the group and nice. But from time to time
he would do something just so obviously socially inappropriate and if
people said anything he would seem startled and mad. He was an
engineering student and he also talked a lot about elevators and he had
traveled all over the States to see 'famous' elevators. I was a psychology
student and read about aspergers and it all came clear.
I have no idea if he ever was diagnosed and what his childhood symptoms
were but I'd say here was a person who functioned pretty close to NT but
he clearly had the weak and strong areas typical for asd.
Symptoms can lessen and improve but I don't think they will ever be all
NT. But I do think there comes a point where they do qualify for 'different
but normal'. If that is what you mean by 'recovered' then I think some kids
are.
I would not describe my son as recovered at this point. He's come a long way, but he is still clearly ASD. However, I think the term recovered would apply to my brother.
My brother Jim was born in 1970. He was hyperlexic, could read at age 2, had poor social skills and was picked on mercilessly in grade school. While the other kids were on the playground he would sit by himself and "talk to trees" mumbling to himself. He had obsessions - fist Charlie Brown, later opera and would talk at length about this topic. He was in speech at school, and had pullouts for a resource room. His IQ was 170 and wrote beautiful poetry but struggled with math his entire life. Huge sensory issues around clothing, texture, etc. He was a big kid, but really bad at sports and any other gross motor activities. Never rode a bike until age 10. In highschool he finally made a few close friends who shared his passion for writing and comedy, and they were all picked on for being "different" and "freaks." This is back in the days where 1 in 10,000 kids were dx'd with autism and aspergers was not a known condition. Looking back, and with me sharing all of the resources I've gathered for my son, my parents and I both agree that if Jim were born today he would have an Asperger's diagnosis with sensory issues and clearly hyperlexia.
With my parents as incredibly strong advocates for him, in the days when there were few parents doing this and no one else to turn to for support,Jim got through school (A's in English, D's in Math, everything else in between). He went to SUNY New Paltz for 2 years, but when he took his college entrance exams he scored in the 99th percentile for English and at only an 8th grade math level. He took remedial math for 4 straight semesters and failed it, which caused him to become frustrated in school and drop out. At the same time he was in remedial math, he was in 400 level courses in English and writing as a freshman/sophmore. After Jim dropped out he had some rough years, living with questionable friends and working odd jobs. We all worried alot.
10 years ago my brother decided to move to Chicago to be with the rest of the family. He moved in with my parents with the intention of eventually getting his own apartment but he never did. He held a job consistently at an upscale grocery chain near our home, delivering groceries to elderly people. At night, he worked on his writing and had 2 comedy CDs and a live play produced. It took him a long time to make friends here, but the artistic folks he eventually hooked up with had some business savvy, appreciated Jim's creative genius, and put up with his quirkiness. Luckily for Jim, creative people, whether ASD or not, tend to be a bit quirky so he fit right in. He paid my parents rent and went food shopping for them every week. My dad did Jim's taxes for him, reminded him to pay his car insurance, and basically assured that the details of daily life were taken care of.
Jim's growing up years were tough for him, and the whole family. He never liked to talk about his childhood and if anyone ever brought up a funny story in which Jim was acting "not NT" in some way, he would quickly change the subject and say "do we have to talk about that?" It always saddened me that he was ashamed of his childhood behavior because I wished he could have taken some pride in how much he overcame.
Jim died in May at age 37 (cerebral embolism, freak thing), and over 100 people came to the memorial service. The boy who never had any friends as a child wound up having a big group of friends come to his memorial service and two of them gave very moving speeches on his behalf. Jim was universally described as a "creative genius" and a "man who in some ways was still a big kid." Many of his customers, the elderly people who he would deliver groceries too each week, wrote long letters to my parents in care of the store talking about what a wonderful young man Jim was and how they looked forward to talking with him each week and how much they would miss him. Jim was described by his coworkers as "the nicest guy" who always had a kind word for everyone. When disagreements would arise at work, he was always the one that jumped in to be the peacemaker and help people see each other's point of view.
Noone who met Jim as an adult would ever have guessed at all of the problems he had growing up or have any clue that he was an Aspie. He was always a little quirky, but in the way that many really creative people are quirky, nothing really outside the norm. He held a job, supported himself, had a play produced that he wrote and had an active social life.
It's all subjective, but when I look back, to me my brother was "recovered."
My child is not recovered. In fact lately I think he was even a little bit better when he was a toddler - as he has gotten older he has lost his emotional response a lot more. He has Aspergers but originally was PDD-NOS, I still think he fits PDD-NOS because he doesnt quite fit a typical Aspie dx either. But he is just Autism at school.He has a 2 to 1 para, special ed teacher, & Speech & OT at school but he is in a regular ed classroom.
I remember everyone telling me "He wont need any special ed, hes gonna be fine, he is so bright, plays with kids," ect. Well, they were wrong :( He is having a horrible time at school. He is still trying to write his letters and the other kids are working on full sentences & little paragraphs because his fine motor is so poor. He still has tons of social issues & doesnt have very many friends.
I really believed that he was going to "recover" because he didnt seem like any of the other Autistic kids. He has not made the progress that I wanted him to make, but he is very good at reading. The truth is, despite all my efforts (I have spent thousands and tried tons of things, did GFCF diet for a whole year, vitamins, self taught ABA because I couldnt afford anything else, basically missed my NT daughter's babyhood because I was doing so much to cure my son) I don't even know if he will get through first grade.
Lately I have been feeling like the only way these kids are "recovering" is because their parents are stars with tons of money. The average American family does not have those resources. Most people I know are living paycheck to paycheck! (I'm living child support check to child support check). It breaks my heart that i don't have the financial resources that the stars do. I mean, Jenny's son got to go to the UCLA ABA program - holy cow, can you even imagine? That is where the ORIGINAL Lovaas UCLA Young Autism Project was formed! She is dating Jim Carrey , her ex (the father) is a successful actor & director. She has so many resouces that none of us could ever dream of having.
Jenny never once said her son was cured. She says he is recovered and uses the "hit by the bus" analogy. When hit by a bus, you recover but still retain some "boo-boos"
My grandson Nate was diagnosed PDD-NOS at 14 months, which is almost unheard of. He did not have any words. He didn't babble consonant sounds. He liked to lay on a blanket and watch the ceiling fan spin. He didn't point, lost clapping, was always constipated, had severe silent reflux, was almost a failure to thrive baby and I believe would have been had my daughter not worked so diligently to get food into him. He never raised his arms to be picked up. He was born at 9lbs 5 ounces (95%) and at a year was below 5th percentile. His gastro diagnosed ulcers in his esophagus and intestinal tract from GERD and enterocolitis (ASD related). At 2 years he could say mama and dadda. He is 2 years 7 months now. Therapies started immediately after diagnosis. He has speech, ABA + floortime, OT, and a momma who never stops interacting with him. He has the vocabulary of a muc older child and uses it appropriately. His therapists come about 15 hours per week. He just started pre-school as he will age out of EI in February and he has a new sibling on the way. The pre-school is an NT school. He has been gluten and cassein free for the last 6 months. He is likely going to eventually get an Aspergers diagnosis if anything at all.
Today I consider him recovered (not cured). The average person will not notice a thing different about him except how smart he is. (He can read and write). His bowel issues are gone. He eats fairly normally although still GFCF. He talks to everyone. In fact he just had a long awaited evaluation at Kennedy Krietger (Johns Hopkins) and scofred 0 in communication (that's the best) and barely "failed" the social aspect of the ADOS. People "in the know" will notice that his eye contact is not perfect. It is with his parents and therapists and other family members, but it isn't great with strangers. So what? In pre-school the other day my daughter watched him from the parking lot. He called to another child and held her hand as he pulled her toward the sliding board to play with her. He goes for 3 hours 2X week and it was his 3rd day.
I could go on and on, but I don't want to bore you guys. In my eyes Nate is recovered. At least as well as I am recovered. I have a slight limp from a fracture I got in a car accident 40 years ago. I didn't walk for 1 year but with hard work, I am walking. Perhaps not perfectly. But who is perfect anyway?
I agree with fred about 'recovered' kids clips on the internet. Both my kids present as being more 'recovered' than most of them.
They still have their quirks but nothing dissabilitating, they live pretty much like their nt classmates, have pals etc.
I always get inspired to retry biomed and diets, but we never got the concrete results from it that we get with intervention so i put my energies there. Mother nature has done most of the work for us IMO - I can take some credit but not all that much. I really believe we all can just do our best and follow what works best for our kids and that's it. It's a shame parents feel under pressure to 'recover' their kids because most kids will improve and make great strides but few actualy leave the spectrum and recover completey. We are setting ouselves up for failure and/or dissapointment instead of enjoying the wonderful gains our kids make.
Having said that, I know a kid who left the spectrum and he looks nt to me - football team - no support in school etc.. it does happen.
He was diagnosed by Dr. James Coplan who used to head the autism department at Children's Hospital of Philadelphia in Pennsylvania but is now in private practice. His second opinion was from another physician and I don't know his name although he concurred.
Thanks for the heads-up on his name Cas.
He sounds a lot like my son, Gramma (he's now seven and in second grade). My son used to tune out and stare at fans and spinny things, watch the clothes dryer, line things up, etc., some sensory issues, constipation - etc. He probably was diagnosable at that age, too. He's in second grade now and doing well - still has quirks and has some problems with emotional regulation, has obsessions, etc - he might be a mild Aspie or, like me, have some vague but not-so-serious disorder such as OCPD - but he's thankfully not autistic (in the classical sense). He never had a language delay, though. I'd be encouraged for your grandson's future, as my DS is really doing well in grade school, has friends and is generally happy - just more sensitive than your average 2nd grader. He just learned to play "chess" and that's his obsession du jour.
There must be some relationship between his early development, his current minor issues, my own minor issues, and my daughters autism - it's just, like, the girls are an amplification of the quirks that I share with my son. I guess I could add my son to the recovery stories if he were diagnosed, which he maybe could have been had I seen a specialist when he was around 18 months. It's all so confusing.
You're right Fred. I'm glad your son is doing so well. It is all totally confusing. I'm a special ed teacher and I believe that the autism we see today is NOT the same autism for many children, as was diagnosed even 15-20 years ago. The rates have increased and the outcome is so much happier for so many of these children....thankfully.
Something I learned just recently though. I thought of Nate as having serious language delays. I never heard of a child not having any language at 2 years who turned out just perfect. However, at least for as asperger's diagnosis, they don't count language problems as a delay til after 2 years of age. Nate is not considered language delayed in the world of aspergers.
Yeah, my son talked quite well at two (I remember, we had one of those 'What To Expect..." books and he was always ahead with his milestones and we were so proud). My daughters, no so much. They had words - enough so that they passed the m-chat, but they couldn't really communicate functionally until around three, and even then, it wasn't social language (that didn't come until after four or so). The bar for Asperger's syndrome as far as language is concerned is pretty low - single words by two, phrases by three. My daughters meet those criteria, but I consider them autistic because their language, though much better at 5.0, is not like there peers, especially in spontaneous, social langauge.
Sometimes I hope against hope that my daughters are actually as capable as my son - just that their twinism has caused them to be more delayed than he ever was. The present with many of the same quirks - just in my son, the quirks don't rise to the level of a disorder (because he can function well with age appropraite expectations of learning, language, and behavior) while in my daughters, they do.
I should probably get in a study, because there's clearly something genetic in my family. I was just diagnosed with something called obsessive compulsive personality disorder (not to be confused with obsessive compulsive disorder - very different), which has many of the same traits as very high functioning autism - (literal, black and white thinking, obsessive interests, rigid thinking). I'm also an engineer which almost requires this type of personality to excel. My dad clearly has this OCPD (and, unfortuneately, he's suffering from alcholism) and my son, too. I think there's lots of overlap between a lot of these disorders - especially in the HF kids.
Based on what Jenny McCarthy has said about her son, he is currently at the place where my son was DX'd. I am blessed, my son is VERY mild, but still on the spectrum. It is all relative. Her son made huge leaps and bounds towards typicality (is that a word
[/QUOTE]
That is what I thought about my kids, that her son looks a lot like my boys. Only my boys are no where near that verbal, but the eye contact and interaction and playing he does, that is what my kids do, actually they have always been like that, and they are still getting a ton of therapy and I still say we have a long way to go and not just with the language. I could see it in that short clip of him on Oprah of how he is now. I have a nephew who if he had been a child today would have been diagnosed probably as moderate ASD. My sister has been in serious denial. He is 17 now and he does well, but there are small problems, there will always be problems. You can just tell something is different. Its not as obvious today as at age 4 and I'm not sure others see it, his mother refuses to see it, but its there.
I have a bit of a different take on this "recovered" word usage than I would have even 5 years ago. My concern with the use of the words recovered, recovering, or cured is that in looking at my son, the outside world would have no idea that he is diagnosed with autism. This is a tough situation for him because expectations for him to understand things are high. Because he has autism he does need and probably will always need supports. But it varies so much from situation to situation what he needs help with. It's hard to get people to understand this and I think promoting autism as something to recover from adds just that more misunderstanding of my son (and the many other kids out there like him) as he progresses through life.
I would like to give an example of something that we encountered just a few days ago. He hurt his finger and I called the dr. on friday to have it looked at. He wanted to get an xray so he sent us down the hall with the order. The tech took my son into the xray room and after the dr. looked at the xray he said it wasn't broken. We went home and about 4 hours later the tech calls and asks what hand the injured finger was, I told her it was the left. She asked if we could come back because she did the wrong hand. I had told Zach prior to going what we were doing, he knew his finger hurt and I explained the xray thing before he went in. Come to find out after talking to him, all she said when he went in was "put your hand on the table" he did and she took the xray. Thing was he put the non-injured hand on the table instead of the one that was injured. It didn't occur to him until our conversation that he should have put the injured hand on the table. It was like a lightbulb went off in his head.
This is just one of many things that happen frequently and sometimes catch me by surprise. The tech was a bit snotty when we returned like it was his fault for not putting the correct hand on the table. I don't know I just really have a problem with everyday, uninformed people (those that catch this on tv but otherwise have little knowledge of autism) thinking that there is recovery from this. I think of the future and the higher expectations for Zach because he looks "recovered".
I personally don't believe in "recovery" autism is a life long challange in my opinion.
My son is VERY high functioning... has fantastic verbal skills, can easily hold a conversaion, asks and answers questions with ease, is very social (still does better with adults than peers though), has no gross or fine motor delays, and is quite advanced academically. People would never pick him out of a crowd unless they were very familiar with autism and spent a lot of time with him. BUT he's still on the spectrum imo and he will always have some issues and struggles throughout his life I am sure.
We've never done anything dietary or biomedical with him. He's been in ST, OT, an integrated preschool, and a typical preschool, as well as social skills groups, and we work with Floortime and RDI type principles at home (no formal program set up).
Autism is an uphill battle and its not going away. Sure the slope of that hill may be less now but its still there... he's still going to have to learn to adapt and cope with his different way of thinking for the rest of his life.
Wow, thank you everyone for sharing your stories.
Even though I am 99.9% convinced that my husband has aspergers, I keep wanting to believe that it is due to his horrible childhood. So a part of me doesn't really want to believe that my child is on the spectrum. In fact, most of the people that we know, even friends who are teachers, have a hard time believing that our son is autistic. In public, he is quiet as a mouse. He comes off as being shy. Plus he will talk to me when he wants something. So they don't see anything unusual at all, although they did start to wonder about him when he started showing more physical delays.
Part of me still wonders if it is something we did to make him look like he was autistic. One person said to us, "Well, if you do everything for him, of course he's not going to want to get up and do it himself." One sister said that I was too careful with him when he was a baby, and the other says that I carried him too much. Well, that's because he absolutely would not walk anywhere! The only tantrums he ever threw in his life before the age of 3 were because he did not want to walk even very short distances. Rationally I know that could not be the whole cause, especially since our friends still carry their son way more than we ever carried ours, and he is developing just fine.
Plus my husband spent a lot of time around the house zoning out, staring into space, etc. I know it used to freak our son out. Then I would make faces, wave my arm to get his attention, or tell him to snap out of it, which probably stressed our son out even more.
Anyway, I guess I'm rambling now. But I do know this, that the school district will probably not qualify him for services after this year. His fine motor is great, he knows his letters and numbers, and he listens in class. So recovered or not, he's probably going straight into regular ed preschool next year.
I have a lot to say here and even more has happened sinc eI posted this a week ago, but rather than repost...
http://www.autism-pdd.net/forum/forum_posts.asp?TID=20500&am p;PN=1
Recovery means different things to different people. In my opinion, recovery is when you do not have a single autistic trait... So, I do not beleive in recovery or cure...
I do beleive in improvments, maturation, self control...autisic kids grown up to be autistic adults.
My child is doing better...so I'd say he's improving but not recovering/ recovered. He is talking in full un-prompted sentences, perfect eye contact and playing appropriately with his toys. He still is uncomfortable around children his age, but he is getting better with it. Now, the toe-walking thing I can't get him to stop!This is my opinion.
The term "recovered" is subjective. I've not seen Jenny's child, but from what I've heard, he's still autistic. If you look at the "recovered" kids on youtube or from the various cure web-sites, you'll see a bunch of older PDD-NOS kids who are doing well, but an ASD parent can still easily tell that these kids are still not neuro-typical. I have no doubt that there are kids who were diagnosed as autistic when young and are now truly indistinguishable from their neuro-typical peers, but this must be rare, as even those who have a vested interest in displaying cases of "recovery" (typically those trying to market their autism treatments or those trying to prove their causation theories by claiming to have recovered their kids with specific treatments) are not showing kids who, to me, seem completely neuro-typical.
My opinion is that most "recovered" kids are simply older ASD kids who have matured and gained skills and are now doing better than the parent's expected (and the bar is set very low for our kids, so that any progress is sometimes viewed as a miracle). When some pediatricians are apparently still telling parents that their two year old, just diagnosed children will "likely never talk, never attend regular school, probably need to be placed in a supervised living arrangement when they are older...", it's easy to understand how, when years later the child is talking and is in school and learning and making good progress - it's easy to understand how the parents might see that as "recovery" when, in reality, it's just 'growing up'.
My daughters just turned 5.0. They are by no means "recovered" - at least by my definition of the term. They are obviously autistic, though a person who is not familiar with ASDs might not think 'autism' - maybe spoiled, incorrigable, AD/HD or something, but probably not 'autistic'. They still have problems with language pragmatics, grammar and syntax, have difficulty modulating their voice and are clumsy and overly sensitive and still tantrum frequently. They have odd body movements and gross motor coordination issues and their play lacks imagination.
However, they have clear, functional language, can engage in basic conversations and are near age appropriate in their self-help, self-care, adaptive skills, are academically on par with their peers, etc - so I could easily argue that they are, in fact, "recovered" or "recovering", if that's what I believed.
We have done very little with educational or medical interventions. I don't wear this as a badge of honor - I wish I had hit hard with early intervention, but I was in denial for a long time and they didn't start any therapies until they were 3.0, and even then, it was just basic stuff offered through the local school system (a bit of language therapy, a bit of OT, and 2.5 hours of developmental preschool). They weren't diagnosed as autistic until they were 4.0. As far as biomedical interventions, we have given them fishoil since about age 4.5, try to eat a healthy (though mainstream) diet, and give them OTC children's multi-vitamins.
The spent two school years in developmental preschool and started regular, public kindergarten this fall (at just turned 5.0), and are doing fine. I do not know if they will be able to keep up in this mainstream classroom, and they very well may end up back in a special ed class next year, but for now, they are in there with their mainstream peers and holding their own. I would never have thought this possible when they were younger, and if I had had them on a Jenny McCarthey style intervention plan, I would surely be convinced, as she apparently is, that it was the "interventions" that "pulled them out", but in my negligence, ironically, I know that the progress they have made has all been their own.
Based on what Jenny McCarthy has said about her son, he is currently at the place where my son was DX'd. I am blessed, my son is VERY mild, but still on the spectrum. It is all relative. Her son made huge leaps and bounds towards typicality (is that a wordI read the note in the PEOPLE magazine article from the physician who was asked to comment. He said that about 10% of kids who get intense early intervention get to the point where most of the obvious symptoms are gone. However, he still see social issues even in these kids. My own experience during my 16 years in the autism community is that that is a high percentage. I know maybe 5 percent who reach that nearly-normal level. Of course, I know kids who are almost adults. Many children can handle school almost normally because schools have TONS of supports in place. However, the real world of jobs or college is not so welcoming, so many kids who "pass" in school still have issues becoming independent as adults. So when your child reaches the age of transition to adulthood, make SURE you take advantage of all the services you can. Statistics for ASD kids "making it" in the "real world" are still grim. However, kids who are young now are getting interventions that our older kids never got, so who knows?
I once thought my son "outgrew" autism. As he got older, it became apparent that he still is on the Spectrum. I think Jenny McCarthy's child will still have struggles. He is still very young. At five, my son seemed normal, but he's not. I don't want to be discouraging, but I don't think you ever fully recover, and at age five it's way too soon to tell. With a fifteen year old, my experience is a lot like tzoyas. The problems remain and make it difficult in the real world, even when the early trappings are gone.
/grumble...Jenny
My kids are not "recovered" and I don't think it's possible to fully recover from autism. I do think kids get better. I've seen improvement with both of my boys. I also think that with the proper interventions right now, Jacob will probably be indistinguishable one day. Right now, he has autism and he always will. Brendon on the other hand, he's more profoundly affected, and I don't see a "recovery" there. I see him getting better though. I see him now pointing at an object and nodding to say he wants it. Much better than before when I had ot "read his mind" to know what he wanted. Improvement and progress are what's important to me....Not "recovery".
My son is like Faithishope's - He started very mild on the spectrum. When I see "recovered" kids - they present like my son.
I'm so glad I've not tried the GFCF diet - because every time I think, Well, maybe there is a brain/gut connection, and he would be "typical" with this diet" - he makes a great big developmental leap without it - and I thank God I didn't start it - because then I'd attribute his new development to the diet - and we'd be stuck on it forever!
He doesn't have the allergies/ear infections/gut issues so many of these kids have - so I don't think he needs the diet. I can't help but wonder - because he LOVES carbs - but don't all kids?
This is just to say that I'm glad Jenny's child is "recovered" in her opinion - but my son wouldn't be considered on the spectrum, then. And he is.
My son is not recovered yet but my friend's daughter is. She is 11 and lost the label a long time ago. They never used dietary intervention. They used primarily ABA, (habilitation therapy) intensely engaging her 40hrs/wk, and then the spch, ot, pt, music which we get here in AZ before 6 (with out having to prove child has autism just at risk.) My friend said that she would use anything to engage her daughter i.e taking a bath, going to the grocery store (tell me 3 fruits with visual if in that section or not if in different.) The daughter is now in sports programs, has friends, in clubs, typical school, etc. I have HOPE.Sorry, didnt answer you fully. I have no idea what caused my son's autism. I suspect vaccines but do not know for sure. I do have a cousin on the spectrum so I do think there is a heredity link. I have not had my youngest 2 vaccinated just in case. We mainly use ABA, speech, ot, music and pt. ABA has been the biggest tool to teach James and engage him. I just bought a book which is fabulous and you can actually go to their website and download it for free & get TONS of resources. Book is Applied Behavior Analysis for Teachers by Alberto & Troutman. The website is www.prenhall.com/alberto Seriously fabulous in my opinion. Good Luck!
I just saw Jenny McCarthy on Larry King Live. I, too, have a child, now almost 4, who was "recovered" but we did not do any of the dietary things that she did. I attribute his progress, first of all to his developmental ped, but she directed us to many kinds of therapies, including Occupational Therapy for sensory issues, which I think made the biggest difference.
He also got speech, physical therapy before the age of 3, adaptive p.e., and behavior therapy, plus a therapeutic preschool.
I would love to hear from anyone else whose child was also pulled out. What therapies have you used? What do you suspect caused your child's autism? What changes have you seen? What do you attribute it to? What have been your challenges?
Our son can now answer questions and participate in actual conversations, instead of having monologues about his favorite topics. He had a lot of physical delays, which he is still trying to overcome. His fine motor is great, but his gross-motor is still really low. He has a lot of weakness and does not like to move.
His father is typical Aspergers. I definitely think it's hereditary in our case.
Our son got intense early intervention that started at 16 mos. We were lucky to live in NJ at the time. He definitely went from profound to high functioning between ABA/VB and intensive autism preschool.
But we are nowhere near cured. I do not believe one can recover or be sured from autism. But with research based interventions, you can improve.
When this all started close to five years ago, I fooled myself with thinkings like:
If he'd only look at me, things would be better.
If he'd only point at what he wants, things would be better.
If he'd only sign, talk, be potty trained, want friends, etc
It keeps changing and there is always something new to be working with Nick on. So I just know now that this, too, will past and we'll be on a new adventure soon. This keeps my sanity-well, most days
I dont know if "recovered" is the correct word but my son has come along way when he kinda shutdown at the age of 2. Right now his develop. ped. told me my son is coming out of autism. He will have some regressions but he will come out of them as well. So far,its been 3 months since the do. told me this and he has changed so much that its hard to believe he even had autism to begin with.
I believe that parents who take care of their kids at early age, could get "recovered". My son was dx with pdd nos, which was mild autism. When new ppl meet him they say they would never think he had autism,because he looks NT. My son started EI at the age of 2 1/2. At 3 he started special ed. school and now he is still in the same school in pre-k. He still receives the same therapy as a year ago he started. He gets 3x ST and 2x OT. Besides floortime, ABA and Behavior which is incorporated at the school as well.
I hate words like recovered and cured. First of all, can't speak for everyone else here but i don't look at my son as having a "disease" or "illness". He has Autism. paint it any color you like. Sure he is doing alot more things now at age 4 then he was when he was first diagnosed at age 2, but like Fred, other than pre-k at the local elementary school, we have not pushed or engaged in any other "treatments" or therapies. His progress like Fred's children has come from himself. Even though this goes against alot of what doctors and other parents say. I feel like my sons so called "early intervention" was just "early specialized education" the kind the regular pre-schools SHOULD give your children but don't. Instead regular preschools are more of a glorified play group. My child's vocabulary went from his own babble language that he understood to becoming more clearer for us to understand just in the last 4 months. Seems to be alot of that going on if you notice, a big language jump in age 4. Do I think my son has "recovered" because he is using words to communicate more and more, he doesn't flap as much? No. I just think he's getting older. Autism is not a dirty word in our house, nor is it an affliction or disease that my son "suffers" from. However I understand why many parents would see this as such, if there child Autism is very severe. Autism is what it is.......and it will always be a part of your child, it may change its from and grow with your child but it will always be there.Copyright Autism-PDD.net