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Old 10-15-2005, 11:23 PM   #1
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Have never met any autistic children and would like comparisons

In May my son Joshua was dx with autism. He will be 3 in Dec. The therapists tell me they think he will do well but what does that really mean? They say he does a lot of things very well like play with toys correctly, follow some simple commands, he likes to play with other children, he will sometimes kiss and hug when asked, he does not isolate himself, he does not flap his hands or hold them over his ears, he does not get overly attached to any toys or engrossed in them for long periods of time, but some of the things he does do is line up things and get upset if you touch it, however I can sometimes move things around and get his attention away from that, he does not speak, he does babble however like he thinks he is talking to you, he responds to his name 50% of the time, he does not ever bring me anything to look at or show me, he does not seem to decipher emotions and if he hurts himself he will keep picking at the scab and make himself bleed without showing any pain symptoms, and it seems only 50% of the time he notices I have left or have returned. He does not wave hi or bye either. I know it seems like I have written more bad then good , it's easier to remember I think, but the only comparison I have for him is is 4 year old "normal" cousin and when they play he loves him and hugs him and will fight over cars with him. Some of my family think that Josh is only delayed and will eventually catch up. I wish I could see other children like Josh so I can know what is in store for him and me. And perhaps selfishly to see if he is perhaps only a mild case. I wonder that because I stopped his immunizations after he was 6 months old. I was hoping someone could share their childs symptoms and whether their child is considered mild, moderate or severe. Thank You.

 
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Old 10-15-2005, 11:44 PM   #2
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Re: Have never met any autistic children and would like comparisons

I just wanted to add that I just saw the post "What do u think of this list" and could rule out a lot of it, but now I am wondering will he start doing some of these things when he turns 4? Does autism get worse with age??

 
Old 10-16-2005, 11:57 AM   #3
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Re: Have never met any autistic children and would like comparisons

all kids are different, even our autistic children are different, my daughter does not show the well known traits of autism (hand flapping, aggression, rocking etc), i understand your need to compare and see other autistic children as i was exactly the same, it's the wanting to know where your child is in the scheme of things, i have met children who are at the higher end of the spectrum and children at the lower end of the spectrum, try to think of the spectrum as having many colours and your child is one of the many beautiful colours, my daughter is 4 and has been diagnosed for 18 months, its becoming more apparent that she has alot of high functioning qualities, which is great, i remember asking the specialist, "on a scale of 1-10, 1 being mild and 10 being severe, where is my daughter?" she replied "on a scale of 1-10 we couldn't tell you where a NT child is" . i left feeling frustrated, but i know what she was getting at now, children of this age change and grow so rapidly you can't begin to say where they are, because next month they are somewhere different, my daughter is a different child to what she was last year, and in a positve way. some behaviours will get worse but isn't that the same with all kids? i too read the list and my daughter didn't fit into alot of it. my daughter has problems in all three areas thats associated with autism, communication, lack of imagination, and lack of social skills, try not to worry about your boy and where he is on scale, because next year he'll be a different boy, good luck.

 
Old 10-21-2005, 01:06 PM   #4
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Re: Have never met any autistic children and would like comparisons

He shouldn't be too bad. You'll have a hard time making eye contact with him, though.
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Old 10-21-2005, 03:08 PM   #5
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Re: Have never met any autistic children and would like comparisons

Hi my daughter 9 is so much better but still has the ocd thoughts about things at times .We redirect her in getting on a different subject and she is less mad about doing it.She is just learning to read eye problems this is another post in the future she has to see an eye specialist waiting for her OT to give me a name.We know she is nearsighted she had a dx for it at age 5 but her OT feels it is much more than that.She is considered very high functioning in the spectrum.Anyway shes come along way. May i ask what vaccines your son got to age 6 months.Thanks

 
Old 10-22-2005, 12:54 AM   #6
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Re: Have never met any autistic children and would like comparisons

My son is 6 and was diagnosed at the age of 2 1/2. He's considered to be high functioning autistic; borderline Aspergers. He is the most loving, wonderful son and I wouldn't trade him for the world. I can honestly say he has at one time or another shown at least half of the behaviors on that list, but he's really grown and is learning new things each day. His main issues at this time are mostly sensory, eg. smells/appearance of different types of foods will make him gag, sensitivity to loud sounds & bright light, ect. He has been a toe walker since he first started walking, and still avoids eye contact at times. His form of stimming is jumping on the furniture and he holds his hand up about 6 inches from his face as if filtering the light through his fingers, he kind of hums when he does this sometimes. He's aggressive when there's no way out of a situation. He used to have frequent meltdowns over the littlest thing, but now only really gets upset when he can't have his way. He didn't hardly speak at all until he was almost 4. He;s had early intervention classes teaching ABA, speech therapy, Occupational therapy, and alot of patience, you almost can't get him to stop talking. He's a great student (in a developmental kindergarten). His teachers say he has a gentle heart and is above average intelligence. The lady that came to our house to diagnose him had us believing he was severely disabled, and let me tell you she was completely wrong. He may have autism, but he's kind of like a sponge in that he absorbs anything you tell him and retains information like I have never seen anyone do.
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Old 10-27-2005, 03:50 AM   #7
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Re: Have never met any autistic children and would like comparisons

I have written almost a million posts about my daughter so I wont go to far into it here but just say I tried all that comparing. I still compare I cannot help myself. I want to be able to make sure she gets the best whatever.

She "mild to moderate" tacked on dx of ASD probably autism. She has come ahead in leaps and bounds in the last two years. She still doesnt talk communicatively but has said "I love you", "let's cuddle" and lots of single words to satisfy wants/needs. She has in the last couple of months looked at stuff I have pointed out (look aeroplane) and has even pointed stuff out to me once or twice (moon, butterfly to name a couple).

It is a far cry from the deep and meaningfuls I had always hoped to have with my daughter. But that was my dream and not hers.

Most days I am certain that she will hold down a job and maintain a relationship while making her own way in the world. Other nights I cry myself to sleep thinking about all the stuff she could miss.

The only thing standing between my daughter and a label of Aspergers is that she doesnt talk. (By all accounts this label seems to have the most success stories.)I still have hope that her dx will change to AS or HFA. It has happened before to others.

Is he in any early intervention programs?

 
Old 10-28-2005, 01:56 AM   #8
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Re: Have never met any autistic children and would like comparisons

How old is your daughter Andrew63? When did she begin to say the one words she uses? Yes my son is in early intervention. He recieves one hour and a half of speech every week, one hour and half of occupational a week and one hour of behavioral therapy a week. After reading on these posts about improvements seen after 30 - 40 hours of therapy a week, I am feeling pretty down about the measly hour and half my son gets. That is obviously why we are not seeing much improvement. However they say he can start in some special program in the public school just after he turns three this december.

 
Old 10-28-2005, 07:27 AM   #9
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Re: Have never met any autistic children and would like comparisons

As I read your posts, I think about that fact that it was just a year ago that my grandson was dx. He was 3 at the time, and we were concerned that since he had had his tongue clipped recently, he hadn't really started talking like we thought he would. Since he was eligible for services through the school system, we thought we would take him in for a speech evaluation. He was evaluated by a whole team of professionals, who, two weeks later, told us that they thought he was autisitic! We were shocked, but as I introduced myself that night on the internet to the changes in how autism was now "defined" over the rocking, spinning plates image I had from reading in college several years earlier, I recognized, with increasing tears, that my little Drake had many of the characteristics.

A year later, he has made such giant leaps! We live in a remote area where he has NOT gotten the ABA and floor time, as well as many of the other therapies that I have read about here in the past year. What he has gotten is: ongoing treatment through Pfeiffer Treatment Center (Wow! Did this open him up!), GFCF diet, a developmental preschool where he attends for 3 hours a day during the school year (and is one of 4 in his class this year), and anything else we can do that we think will help him!

His talking, prior to this, was limited to repeating conversations that he saw on TV, and babbling in noncoherent ways. He now talks in complete sentences, is clearly able to respond to, and let people know what he wants through verbal means, calls people by their names, and has significantly reduced covering his ears, toe walking, and "deaf-like" behaviors. While he is still not potty trained (he will pee on command, but will still hide in a the corner to poop, and then let you know that he has), he was weaned from his "boo" (for which his teeth are eternally grateful!) He,as always, lights up a room when he is in it with his delightful spirit. He is the kind of child that people (not just his loving Nana) will notice in a room because o fhis charm.

He is high functioning and intelligent. Do we know what his future holds? Not a clue. Will he be able to ever live on his own? Hard to imagine ANY 4-year-old as being old enough to do so. Do I lose sleep over it? It won't change the outcome. Do I have periods where I ache for what my son is dealing with when he is around other "normal" 4 year olds with their parents, and comments are made about his son's lack of ability to engage in conversations like others his age? Yes! But I try to focus on what is, and not what is lacking. I have learned, through raising a "special needs" child of my own, that in chosing to celebrate and recognize the good enabled me to have a far more positive outlook on life, as well as a better relationship with my child. It also enabled me to move forward rather than get stuck in what might never be.

I wish you well on your path....

 
Old 10-28-2005, 07:40 AM   #10
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Re: Have never met any autistic children and would like comparisons

As I read your posts, I think about that fact that it was just a year ago that my grandson was dx. He was 3 at the time, and we were concerned that since he had had his tongue clipped recently, he hadn't really started talking like we thought he would. Since he was eligible for services through the school system, we thought we would take him in for a speech evaluation. He was evaluated by a whole team of professionals, who, two weeks later, told us that they thought he was autisitic! We were shocked, but as I introduced myself that night on the internet to the changes in how autism was now "defined" over the rocking, spinning plates image I had from reading in college several years earlier, I recognized, with increasing tears, that my little Drake had many of the characteristics.

A year later, he has made such giant leaps! We live in a remote area where he has NOT gotten the ABA and floor time, as well as many of the other therapies that I have read about here in the past year. What he has gotten is: ongoing treatment through Pfeiffer Treatment Center (Wow! Did this open him up!), GFCF diet, a developmental preschool where he attends for 3 hours a day during the school year (and is one of 4 in his class this year), and anything else we can do that we think will help him!

His talking, prior to this, was limited to repeating conversations that he saw on TV, and babbling in noncoherent ways. He now talks in complete sentences, is clearly able to respond to, and let people know what he wants through verbal means, calls people by their names, and has significantly reduced covering his ears, toe walking, and "deaf-like" behaviors. While he is still not potty trained (he will pee on command, but will still hide in a the corner to poop, and then let you know that he has), he was weaned from his "boo" (for which his teeth are eternally grateful!) He,as always, lights up a room when he is in it with his delightful spirit. He is the kind of child that people (not just his loving Nana) will notice in a room because o fhis charm.

He is high functioning and intelligent. Do we know what his future holds? Not a clue. Will he be able to ever live on his own? Hard to imagine ANY 4-year-old as being old enough to do so. Do I lose sleep over it? It won't change the outcome. Do I have periods where I ache for what my son is dealing with when he is around other "normal" 4 year olds with their parents, and comments are made about his son's lack of ability to engage in conversations like others his age? Yes! But I try to focus on what is, and not what is lacking. I have learned, through raising a "special needs" child of my own, that in chosing to celebrate and recognize the good enabled me to have a far more positive outlook on life, as well as a better relationship with my child. It also enabled me to move forward rather than get stuck in what might never be.

I wish you well on your path....

 
Old 11-04-2005, 01:25 PM   #11
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Re: Have never met any autistic children and would like comparisons

We have a friend at the University of Michigan Autism and Communication Disorders Center who has told me that their research says that less than 25 hours per week of ABA is not enough. I'm not sure if more than that is necessary. The original Lovaas stuff was 35 or 40. We moved to a new state to get intervention for our son because there was inadequate services available where we lived.
In response to your original question, though, your son sounds a lot like mine was at that age -- actually less symptomatic, if that is an appropriate way of describing it. After 10.5 months of intensive in home therapy (we started at around 18 hours and are now at 27 - 30 one-on-one per week) he is comminicating well. Lots of phrases and an ocassional sentence. He comes up to me countless times a day and says, "Mama, come play with me." We still have a long way to go, but the progress is unbeleivable. You have every reason to be hopefull. The folks we work with are very experienced and tell me often how great he's doing and that he is on track to be a "best outcome" kid. That would mean that he could enter grade school indistinguishable from his peers and without support. I've found it interesting to read biographies of people on the spectrum. Donna Williams is an adult woman on the spectrum who has a website that is really encouraging. Read "A Curious Incident of the Dog in the Nighttime." (Forgive the quotes I don't know how to underline or format font on these things.) It is a book of fiction, but the main character is an adolescent boy on the spectrum. The thing this book did for me was make me okay with even an imperfect outcome. I liked the boy in this story so much; even though he was clearly "different" he was just an awesome kid and I thought, I can handle that. I've talked to parents who attend a local support group meeting and get to see kids that are older than their own. I don't know much, yet, but my limited knowledge would tell me that with support your son will do really well and grow up to be an amazing person. Another book that I liked was "Facing Autism" by Lynn Hamilton. She went throught the program our son is in and gives some good advise on what to do (the first ten things to do.) I've heard through a local mom who knows the author that Ms. Hamilton's son is one of most amazing 'recovery' stories that she's seen. I've spoken to another mom whose son is in this program who is now 8 and is "indistinguishable" from his peers, though he has some issues that they address together. I'm not entirely comfortable with labels like 'recovery' or with labeling all autistic traits as problems. My hope for my son is that he'll be happy, able to participate in the world in a way that is fulfilling to him, and that he'll know how loved and adored he has always been. He is one of the funniest and enjoyable people I've ever met (even with his tantrums and rigidity). For me it has been a year and a half journey to pretty solid acceptance. I still cry in the shower at times, but as with all difficult things in life, it takes time to adjust. You're doing great. Hang in there. Take it one day at a time. Take care of yourself. All the cliche's apply. Oh, and a ps - we are also doing the GFCF diet and, though I'm still a little skeptical, we think it has helped our son respond in therapy.

 
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