Apasclo
04-30-2004, 06:32 PM
Hey all.
My 3 year old son, Gabriel, was diagnosed with autism a week ago. Here's the rundown:
He's had an MRI and all is normal. He scored a 50 on the CARS test administered by the psychologist, mainly because he has zero verbal skills.
He's very vocal but not verbal. He can hum a song note for note, in tune or imitate my syllables and inflection when I talk to him but he will not verbalize. He sleeps well and always has. He loves to imaginary play with his stuffed animals (tries to feed them, makes them hop around etc.) and army men. He's very adept at non-verbal communication though he has never pointed at anything. He doesn't get upset when guided from one activity to another. He's not scared of many sounds aside from his 4 month old sister's cries and those really bother him. He was never very good at making eye contact though he has progressed in that area tremendously and will now keep eye contact with total strangers. He prefers older children and adults over children his own age. I'm extremely optimistic about my little guy, though. I feel that once we get the gate to speech open all else will fall into place.
His psychologist rated him as developmentally capable as a 16 month old. I'm very at odds with this for I have never known a 16 month old who can build an impressive Lego castle, feed himself like a little adult, hum Mozart from memory or is as steady on their feet as a 10 year old. I'm extremely disillusioned with the fact that a person who has met my son for 2 hours can set a diagnosis that will be with him all his life. Now, I know my son is autistic but I also know he is not as severe and hopeless as the psychologist made him out to be. Our experience has thus far been extremely doom and gloom......the pamphlets we were given on autism when we found out the diagnosis even had a page dedicated to warning us that our autistic child very well may break up the marriage between my husband and me. It also came with a paper dispelling the "myths" of autism. One of the main myths was, "Underneath an autistic child is a normal child." Worded horribly in my opinion.
I feel like the previous paragraphs have been rants and for that I apologize....it sure did feel good, though.
Anyhow, as is evidenced by my rant, I'm quite wary of "conventional" medicine. My husband and I have yet to take steps with dealing with Gabriel's autism for we're still letting it sink in and doing research and don't want to jump into anything. What we're leaning towards is the gluten-free/dairy-free diet along with vitamin supplements and speech therapy along with ABA with a therapist and at home, split up equally. Any advice or tips from you courageous and experienced parents would be eternally appreciated.
Thank you in advance and talk to you soon,
April
My 3 year old son, Gabriel, was diagnosed with autism a week ago. Here's the rundown:
He's had an MRI and all is normal. He scored a 50 on the CARS test administered by the psychologist, mainly because he has zero verbal skills.
He's very vocal but not verbal. He can hum a song note for note, in tune or imitate my syllables and inflection when I talk to him but he will not verbalize. He sleeps well and always has. He loves to imaginary play with his stuffed animals (tries to feed them, makes them hop around etc.) and army men. He's very adept at non-verbal communication though he has never pointed at anything. He doesn't get upset when guided from one activity to another. He's not scared of many sounds aside from his 4 month old sister's cries and those really bother him. He was never very good at making eye contact though he has progressed in that area tremendously and will now keep eye contact with total strangers. He prefers older children and adults over children his own age. I'm extremely optimistic about my little guy, though. I feel that once we get the gate to speech open all else will fall into place.
His psychologist rated him as developmentally capable as a 16 month old. I'm very at odds with this for I have never known a 16 month old who can build an impressive Lego castle, feed himself like a little adult, hum Mozart from memory or is as steady on their feet as a 10 year old. I'm extremely disillusioned with the fact that a person who has met my son for 2 hours can set a diagnosis that will be with him all his life. Now, I know my son is autistic but I also know he is not as severe and hopeless as the psychologist made him out to be. Our experience has thus far been extremely doom and gloom......the pamphlets we were given on autism when we found out the diagnosis even had a page dedicated to warning us that our autistic child very well may break up the marriage between my husband and me. It also came with a paper dispelling the "myths" of autism. One of the main myths was, "Underneath an autistic child is a normal child." Worded horribly in my opinion.
I feel like the previous paragraphs have been rants and for that I apologize....it sure did feel good, though.
Anyhow, as is evidenced by my rant, I'm quite wary of "conventional" medicine. My husband and I have yet to take steps with dealing with Gabriel's autism for we're still letting it sink in and doing research and don't want to jump into anything. What we're leaning towards is the gluten-free/dairy-free diet along with vitamin supplements and speech therapy along with ABA with a therapist and at home, split up equally. Any advice or tips from you courageous and experienced parents would be eternally appreciated.
Thank you in advance and talk to you soon,
April
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Hope2Heal
04-30-2004, 10:33 PM
HI there
You may want to research specific speech disorders and see how that matches to your situation, such as aphasia, apraxia, etc.
16 months sounds young to get such a diagnosis. i am assuming his hearing has been tested? i know not pointing is a classic sign of autism, as well as speech delays. But speech delays can cause behavior problems in themselves. Since many children do not speak until they are 2 or 3 or older turn out fine, you may really want to focus solely on the speech issue for now.
my nephew was diagnosed with pdd, adhd and hypotonia which means low muscle tone, especially in his mouth, face and fingers. he doens't like to manipulate pencils and small objects. and he is a picky eater. he also didn't start talking until about 3 (a few words). they were thinking he may not ever talk , since his speech delay was very severe. and now a year and half later he is speaking amazingly well in complete sentences, can answer questions, give orders(hes bossy) talk on the phone, etc. with the help of speech and occupational therapy.
you can't get him to be quiet. he also never pointed but he does now.
He always loved music and has similar musical skill to your son. he can imitate rhythms on piano and loves to sing and dance and recite the alphabet, memorizes and knows his phone number, the date, month, etc.
on another note, another boy i knew who i was a nanny for years ago, was diagnosed with pdd with severe language delay. he is now nine and still is not talking at all. however he can sign and is a whiz on the computer, can read, etc. his mom swears the special diet he has been on since he was 3 and vitamins , supplements help him focus more and less behavior problems and sensory issues. but it did nothing for his speech.
i really don't know that much about speech disorders, but there is a lot of info out there. it is too bad you were dealt with in such a cold manner. there is no reason for it. there are a lot of good doctors and therapists out there who see the whole child not just his disability. my nephew has thrived in his developmental preschool, loves his school and his teachers and therapists.
at home, read read read, listen to books on tape, learn some basic sign language and use it, learn about and use visual aids, talk with the child as if he understands everything you say(he probably does) he sounds like a wonderful interesting kid who has a great imagination and is gifted in many ways. i wish you the best, there is a lot of help and support out there.
You may want to research specific speech disorders and see how that matches to your situation, such as aphasia, apraxia, etc.
16 months sounds young to get such a diagnosis. i am assuming his hearing has been tested? i know not pointing is a classic sign of autism, as well as speech delays. But speech delays can cause behavior problems in themselves. Since many children do not speak until they are 2 or 3 or older turn out fine, you may really want to focus solely on the speech issue for now.
my nephew was diagnosed with pdd, adhd and hypotonia which means low muscle tone, especially in his mouth, face and fingers. he doens't like to manipulate pencils and small objects. and he is a picky eater. he also didn't start talking until about 3 (a few words). they were thinking he may not ever talk , since his speech delay was very severe. and now a year and half later he is speaking amazingly well in complete sentences, can answer questions, give orders(hes bossy) talk on the phone, etc. with the help of speech and occupational therapy.
you can't get him to be quiet. he also never pointed but he does now.
He always loved music and has similar musical skill to your son. he can imitate rhythms on piano and loves to sing and dance and recite the alphabet, memorizes and knows his phone number, the date, month, etc.
on another note, another boy i knew who i was a nanny for years ago, was diagnosed with pdd with severe language delay. he is now nine and still is not talking at all. however he can sign and is a whiz on the computer, can read, etc. his mom swears the special diet he has been on since he was 3 and vitamins , supplements help him focus more and less behavior problems and sensory issues. but it did nothing for his speech.
i really don't know that much about speech disorders, but there is a lot of info out there. it is too bad you were dealt with in such a cold manner. there is no reason for it. there are a lot of good doctors and therapists out there who see the whole child not just his disability. my nephew has thrived in his developmental preschool, loves his school and his teachers and therapists.
at home, read read read, listen to books on tape, learn some basic sign language and use it, learn about and use visual aids, talk with the child as if he understands everything you say(he probably does) he sounds like a wonderful interesting kid who has a great imagination and is gifted in many ways. i wish you the best, there is a lot of help and support out there.
Apasclo
05-01-2004, 01:12 AM
Hey there. Thank you for the reply.
I may not have made it very clear, but my son is 3. He was assessed as being as developmentally advanced as a 16 month old. Sorry for the confusion.
We have no behaviour problems aside from the withdrawal and shyness and sometimes your typical toddler impatience. I guess this is all a learning process and I'm ready for it. Thank you for the kind words.
April
I may not have made it very clear, but my son is 3. He was assessed as being as developmentally advanced as a 16 month old. Sorry for the confusion.
We have no behaviour problems aside from the withdrawal and shyness and sometimes your typical toddler impatience. I guess this is all a learning process and I'm ready for it. Thank you for the kind words.
April
KathleenW
05-01-2004, 09:54 AM
Hi April! Thanks for sharing your story. I just wanted to let you know that the plan you are thinking of using for your son is EXACTLY what we did for our little guy and it has worked wonders!!!!!!!! The vitamins and dairy free diet made a huge difference. ABA and speech therapy changed his life. I am excited that your child enjoys imaginary play. Children learn so much through play and you can help him so much in this area. It is so important to keep your child engaged. We spend every minute with our little guy and it has paid off in ways you could never imagine.
I think they can make a fairly accurate assesment in 2 hours where your son is now. It is BY NO MEANS ACCURATE what he will be like for the rest of his life. I also AGREE with the statement that it is a myth that under every autistic child is a normal child. The best statement I read concerning this was in an essay written by someone with autism. He was talking about how people have said that their child is "CURED" from autism. He said suppose you take a neurotypical child and spend 40 hours a week for 3 years teaching him how to be autistic. Will that make him have autism? Of course the answer to that is no because his brain will still be neurotypical.
As far as your question into needing advise. It sounds like you don't need any!!!!!!!!!! You in my opinion are doing everything possible by researching, setting up programs and by implementing diet changes. It made me very excited this week. After we had a panel evaluation at the DEC on Monday where they said my son had no signs of autism we had one of the top experts in autism come into our home later in the week. She spent 4 hours at our home to see if she thought he had any deficits we could work on. After spending 2 hours at our house she said Have you ever thought he was misdiagnosed? I said no. An hour later she said have you ever thought that maybe allergy's have cause his problems. I said no. Then an hour later she said Have you ever thought he might have a seizure disorder because I have never seen a child come as far as yours has in such a short time period and have no lingering symptoms.
It makes me so proud that my son has accomplished so much at age three and that he has always been able to attend a regular school. Time will tell where he will end up in life. Give every second you have, to give your child 150% of your time and attention. I have only 1 child and I am a stay at home mom, so I know for many people this would be impossible. You CAN change your son's life. It is the hardest thing I have done.
I think they can make a fairly accurate assesment in 2 hours where your son is now. It is BY NO MEANS ACCURATE what he will be like for the rest of his life. I also AGREE with the statement that it is a myth that under every autistic child is a normal child. The best statement I read concerning this was in an essay written by someone with autism. He was talking about how people have said that their child is "CURED" from autism. He said suppose you take a neurotypical child and spend 40 hours a week for 3 years teaching him how to be autistic. Will that make him have autism? Of course the answer to that is no because his brain will still be neurotypical.
As far as your question into needing advise. It sounds like you don't need any!!!!!!!!!! You in my opinion are doing everything possible by researching, setting up programs and by implementing diet changes. It made me very excited this week. After we had a panel evaluation at the DEC on Monday where they said my son had no signs of autism we had one of the top experts in autism come into our home later in the week. She spent 4 hours at our home to see if she thought he had any deficits we could work on. After spending 2 hours at our house she said Have you ever thought he was misdiagnosed? I said no. An hour later she said have you ever thought that maybe allergy's have cause his problems. I said no. Then an hour later she said Have you ever thought he might have a seizure disorder because I have never seen a child come as far as yours has in such a short time period and have no lingering symptoms.
It makes me so proud that my son has accomplished so much at age three and that he has always been able to attend a regular school. Time will tell where he will end up in life. Give every second you have, to give your child 150% of your time and attention. I have only 1 child and I am a stay at home mom, so I know for many people this would be impossible. You CAN change your son's life. It is the hardest thing I have done.
Amapeli
05-05-2004, 08:29 PM
Hey, another thing you can do is contact your local school district. My son (just turned 4) was diagnosed in November and in December started Special Needs Preschool where he gets Speech and OT. You son sounds a lot like mine. Mine hums Mozart also. He has had great strides in speech. At 3 he would say 2 word sentences but that is because he went through Early Intervention since he was 2yrs. 3 months. At that time he was saying only 5 prompted words. He is echolalic and has pronoun reversal and will answer questions with questions. When he started in December he would not answer a question at all. Good Luck. Sounds like your on the ball. I am a SAHM also. If you do contact the school system you will want to learn more about IEP's. [ removed ]
jbvalley
05-08-2004, 10:13 PM
I've spent the past 6 years teaching autistic children. Your son sounds like he has excellent skills for a child on the spectrum.
Definitely get in touch with your local school system. You should also become very familiar with the Individuals with Disabilities Education Act of 1997 that spells out what your rights are. There should be programs he can start. OT, Speech, PT. Get started as soon as possible. You may also want to consult a lawyer, depending on your local school system.
If there is a local support group, join it! You are not alone. There are people who understand your world. It's a different one now, but still a beautiful world. There are a ton on the Internet.
Be consistent. Even when it is in the middle of the grocery store and everyone is watching. Your child may be special needs, but he isn't stupid. I can't tell you how many families I have seen that are miserable because their child never learned limits.
Two books you should check out:
Let me hear your voices by Cathrine Maurice and Thinking in Pictures by Temple Gradin
Good luck!
Definitely get in touch with your local school system. You should also become very familiar with the Individuals with Disabilities Education Act of 1997 that spells out what your rights are. There should be programs he can start. OT, Speech, PT. Get started as soon as possible. You may also want to consult a lawyer, depending on your local school system.
If there is a local support group, join it! You are not alone. There are people who understand your world. It's a different one now, but still a beautiful world. There are a ton on the Internet.
Be consistent. Even when it is in the middle of the grocery store and everyone is watching. Your child may be special needs, but he isn't stupid. I can't tell you how many families I have seen that are miserable because their child never learned limits.
Two books you should check out:
Let me hear your voices by Cathrine Maurice and Thinking in Pictures by Temple Gradin
Good luck!
auntym
05-11-2004, 12:25 AM
Hi - just want to welcome you and give you a little advice. GO SLOW. I know you are probably panicked right now, but take it slow and be careful
who you take advice from. A good idea would be to contact your local school district and find out from their "child study team" or disabilities area
what type of services are offered by them. You may not have to pay for
services at home yourself - I didn't. My daughter had ABA Discrete Trials at home payed by district and then she moved into a program at school. This all started at age 3. The ABA Discrete Trials did marvelous things for my daughter who also had no language but was very vocal. She now speaks
very clearly with wonderful sentence structure and clear diction. Her eye contact had improved dramatically, however I do notice that she lately strays a little more but that will always be a battle. I wish you much luck.
Be patient. Be good to yourself whenever you get a minute. Enjoy your son.
There are such tremendous joys these kids give us every day! - and 2 yrs ago I never thought I'd say that!
who you take advice from. A good idea would be to contact your local school district and find out from their "child study team" or disabilities area
what type of services are offered by them. You may not have to pay for
services at home yourself - I didn't. My daughter had ABA Discrete Trials at home payed by district and then she moved into a program at school. This all started at age 3. The ABA Discrete Trials did marvelous things for my daughter who also had no language but was very vocal. She now speaks
very clearly with wonderful sentence structure and clear diction. Her eye contact had improved dramatically, however I do notice that she lately strays a little more but that will always be a battle. I wish you much luck.
Be patient. Be good to yourself whenever you get a minute. Enjoy your son.
There are such tremendous joys these kids give us every day! - and 2 yrs ago I never thought I'd say that!
NineLives
05-11-2004, 12:06 PM
Autism does not always cause the breakup of marriages. Sometimes it makes them stronger. My son is 17. He was diagnosed at about age 8 but we knew when he was about 12 months old that he was different from our other children. His language skills were very poor. He seldom made eye contact. Early intervention is the key along with lots and lots of work. My son is attending high school in inclusion classes. He got his drivers license. He is achieving passing grades with his accomodations. Next year we are hoping that he will receive a high school diploma and he wants to go on for more schooling in the Art and Graphics area. Don't let people tell you that it is all bad. Yep it's a struggle, but you can get through it. In the meantime start attending seminars on autism. You will probably find that everything won't apply to your child but you can pick up some helpful advice and information.
Apasclo
05-20-2004, 06:26 PM
I think I may be the opposite of quite a few people. I'm not panicked at all and taking my sweet time before shoving him into anything. I'm realistically optimistic. I know my little guy and know that speech is the key to everything for him. Once we figure out how to open him up to speech everything else will fall into place.....the place may be a little different than most but I quite enjoy uniqueness.
One thing I'm confused about it the CARS test. (I'll get it out of the way that I absolutely abhor standardized testing.)
My son scored a 50 on it. The highest score I have read on this board, aside from his, was 39, yet compared to the descriptions of what a child with a 39 score is, Gabriel is a typical yet quirky child who just doesn't speak. Is speech a huge portion of this test? Aren't children allowed to have differing personalities at this age? By that, I mean could fears of certain situations just be a personality quirk and not necessarily a disorder? Gabriel is excellent in social situation such as restaurants, stores, and parks but does balk at unfamiliar houses and doctor's offices but even that fear only lasts 10 minutes or so and is easily consoled and quickly adjusts to the situation. He has somewhat of a "cold" personality i.e. shows affection in non-conventional ways and not as often as most children...but again....is it just personality considering there are "cold" adults or are they all undiagnosed autistics? I guess what I'm trying to get at in all this ramble is where do we separate the autism from the personality? Don't get me wrong...my son definitely IS autistic....repetitive behaviours, ridiculously long attention span, intense dislike of certain noises, preference of being alone in his own world, something I call his "happy screams" (a bloodcurtling high pitched scream out of no where when happy kind of like a St. Bernard's bark....one and he's done) and of course the salient lack of speech (though non-verbal communication is excellent). But what falls where? Is he having a tantrum because he is 3 or because he is autistic? Does he sing all the time because he likes music or because he is autistic? Does he hate to hear his sister cry because it annoys him or because he is autistic? Does he hate doctor's offices because he's 3 or because he's autistic? Is there a line between personality and autism or is autism the personality?
-April
One thing I'm confused about it the CARS test. (I'll get it out of the way that I absolutely abhor standardized testing.)
My son scored a 50 on it. The highest score I have read on this board, aside from his, was 39, yet compared to the descriptions of what a child with a 39 score is, Gabriel is a typical yet quirky child who just doesn't speak. Is speech a huge portion of this test? Aren't children allowed to have differing personalities at this age? By that, I mean could fears of certain situations just be a personality quirk and not necessarily a disorder? Gabriel is excellent in social situation such as restaurants, stores, and parks but does balk at unfamiliar houses and doctor's offices but even that fear only lasts 10 minutes or so and is easily consoled and quickly adjusts to the situation. He has somewhat of a "cold" personality i.e. shows affection in non-conventional ways and not as often as most children...but again....is it just personality considering there are "cold" adults or are they all undiagnosed autistics? I guess what I'm trying to get at in all this ramble is where do we separate the autism from the personality? Don't get me wrong...my son definitely IS autistic....repetitive behaviours, ridiculously long attention span, intense dislike of certain noises, preference of being alone in his own world, something I call his "happy screams" (a bloodcurtling high pitched scream out of no where when happy kind of like a St. Bernard's bark....one and he's done) and of course the salient lack of speech (though non-verbal communication is excellent). But what falls where? Is he having a tantrum because he is 3 or because he is autistic? Does he sing all the time because he likes music or because he is autistic? Does he hate to hear his sister cry because it annoys him or because he is autistic? Does he hate doctor's offices because he's 3 or because he's autistic? Is there a line between personality and autism or is autism the personality?
-April