Re: Have a question

[Guest guest]

Melinda,

What you are going through with Liam sounds alot like what I am going

through with Jane 2 1/2. She was dx.in March before the diet by two

drs. who said PDDNOS. Since diet, informal ABA I do at home,

Supplements, etc.. I now get looks like you did. Her SI therzpist and

speech ther.(which by the way she no longer needs now!!!)think I am

trying to make something out of nothing. To make a long story short,

I posed a similar ? to the group a month or so ago. I felt like I was

neurotic or something. I was relieved to hear that this situation is

more common than you think. People still have the stereotypical

vision of autistic ppl-Rain Man-even some " Professionals " . Anyway, I

would have him dx. so that you can get services. My hope is that by

the time Jane is in Kinder, she will be completely mainstreamed and

just a little different-like we all are! email me privately if you

want-I don't want to bore everyone.

Janelle

[Guest guest]

Melinda,

What you are going through with Liam sounds alot like what I am going

through with Jane 2 1/2. She was dx.in March before the diet by two

drs. who said PDDNOS. Since diet, informal ABA I do at home,

Supplements, etc.. I now get looks like you did. Her SI therzpist and

speech ther.(which by the way she no longer needs now!!!)think I am

trying to make something out of nothing. To make a long story short,

I posed a similar ? to the group a month or so ago. I felt like I was

neurotic or something. I was relieved to hear that this situation is

more common than you think. People still have the stereotypical

vision of autistic ppl-Rain Man-even some " Professionals " . Anyway, I

would have him dx. so that you can get services. My hope is that by

the time Jane is in Kinder, she will be completely mainstreamed and

just a little different-like we all are! email me privately if you

want-I don't want to bore everyone.

Janelle

[Guest guest]

>>they therapist asked me what I thought he might have and I said that

I have done extensive research on autism and found that he had most if

not all of the symptoms. The therapist kind of gave the other

therapist a look and then they both agreed that he DIDN'T have autism

and that sometimes to find an answer parents will nit pick at behavior

problems to find one. Basically that I was just looking at him and

assuming he has autism because that is what I want to see.

Here is my dx section for autism. You can read the dx criteria

yourself, and even print it out to show these therapists if you want

to. All kids are different, and yes some behaviors are typical for

all kids, but if your child meets the criteria, then you can get the

dx for him.

http://home.pacbell.net/cscomp/parentin.htm#diagnostic

You can ask the therapist 1. why do they believe you would WANT your

child to be autistic? 2. how are their qualifications for making an

accurate diagnosis better than yours? 3. if they do not believe your

child is autistic, what diagnosis do they believe he SHOULD have?

>>Well fact of the matter is, I looked at every other avenue BUT

autism. I searched for any clue as to his behavior and came to the

conclusion that he might have autism. I didn't want him to have it at

all. I still don't but I still think he does. He has all the syptoms

or used to , but the lady told me that autistic children are always

hyper and run around hard to contain.

I am autistic and I was never like this. Look at the dx criteria. Is

" always hyper " there? Or anything similar? And if so, is it a

REQUIRED characteristic? You will find it is not. You can point it

out to them, or maybe just let it drop, because they seem too

self-important to bother with.

>> Well that has never been Liam

and it isn't what I have read either. Alot of them sit quietly like he

does. A lot of them don't get mad and have tempertantums instead they

ignore the situation and glaze over. That is what he does when he has

a problem he can't handle he goes into himself.

Yes this is me also. And I am still autistic.

>>The therapist told me

herself that she isn't qualified to diagnose autism but if she felt

that he had it then she would send me to someone who is.

Tell her that you know your child better than she does, and she admits

she is not qualified, so you are asking her to refer you to a

qualified person, or you will find someone who will.

>>Ok now my question (for real this time hehe) Do yall think I should

go and have him diagnosed?

Are you receiving the services for him that you believe he needs? If

not, then you do need to get an official diagnosis. But if you are,

then I would recommend you seriously consider NOT obtaining a

diagnosis. Here are my opinions on labelling your child.

http://home.pacbell.net/cscomp/label.htm

http://home.pacbell.net/cscomp/newdx.htm

If your child really IS improved with gfcf to the point he no longer

qualifies as autistic, you may not get that label. That does not mean

that he did not at one time qualify as autistic. But in my opinion,

you want the minimal label you need to get the services he needs.

>>I am just wondering if he does have autism

is the therapy different or does it not really matter if I get a

" real " diagnoses or not. I am just concerned that he will not get the

proper treatment if I don't get him diagnosed, but on the other hand

if he still will.

What therapies/treatments is he receiving? Are they meeting his

needs? Is he improving? Do you want services for issues that you are

unable to receive now? Therapies should be targeted to your

individual child, not to a specific dx. For example, your child would

not need interventions for hyperactivity and " running around " , whether

or not he is autistic. If your child is receiving appropriate

therapies for his current situation, then there would not be anything

additional. But sometimes the dx is required to receive other

interventions, or just to know for your own peace of mind. I would

just be hesitant to get a label which may follow him around for the

rest of his life, if you don't need it.

>>I really don't want to go through the head ache of

staring a doctor in the face and tell him well 6 months ago before the

diet he was autistic and getting a blank stare, like I got yesterday.

You can try a DAN doctor if you want.

http://www.autism.com/ari/danlist.html

Dana

[Guest guest]

Dear Melinda,

I took my son for his 2 year check-up in June thinking that he was

just on his own time table. After I told the pediatrician that

though he used to use a few words, I haven't heard him speak them

lately. She asked me a whole series of questions (does he look at me

in the eyes, does he play imaginatively, does he point or use other

gestures etc.). She then told me she thinks he may be autistic and

wanted me to go to a pediatric neurologist for an official

diagnosis. I immediately got on the internet and found many things

my son does (arm flapping, self-stimulation, bangs cars together

instead of rolling them on the ground, etc) but other things that he

did not have (lines things up, avoidance of physical contact, temper

tantrums etc.) It all confused me. In mid-July I went to the

neurologist. He asked me a number of questions and observed my son

while we talked. He proceeded to tell me my son is not serious

enough for the label of autism but is instead PDD. He said he would

put on his record autism however so I would be able to get more

therapy paid for. I went back on the internet and was more confused

than before. The more I read the more I believed my son was fully

autistic. I contacted the state regional center to see what funding

I can get for his therapy. I told them that the pediatrician thinks

he is autistic and the neurologist thinks he is PDD. They said he

will get more services if he is autistic but they wanted to do their

own evaluation. In mid-August, the did an psychological evaluation

that lasted about 2 hours (not the 10 minutes I got before). They

tried to get him to do different things but he would not co-operate.

They asked me a ton of questions while observing him. I also read

off a list of all the things he does that I believe are autistic.

They said the list was extremely helpful. When it was over they told

me that he is in fact autistic and that sometimes doctors use the

term PDD to soften the blow. They offered to me 9 hours a week group

therapy (sensory integration - goes up to 15 hrs in Dec.), 15 hours a

week ABA (may go up if theapist feels it is necessary) and additional

hours of speech and occupational therapy which will be determined

next month. The have also paid for me to see a speaker on autism.

Everything is paid for by the state. If I had to choose between

going without a label and getting free appropriate services, I choose

the services. Though I am new to this, I have realized that autism

is a condition of opposites. For example, one child doesn't want to

be touched (oversensitive to be touched) while others, like my son

wants to be hugged constantly. Every child has their own unique set

of symptoms. My suggestion is to get a diagnosis as soon as

possible. The worse he starts out at, the more services you get. As

he improves, they will be encouraged and more willing to continue the

services. Even though your son is improving on the diet, he has alot

of catching up to do. If you were able to wave a wand and take his

autism away completely, you would still be left with a boy that has

much catching up to do in communication and many other areas.

P.S. My son can sit for hours by himself. He has his hyper moments

but for the most part he is quiet. After 2 weeks on the diet he has

very good eye contact but he is still autitic. E-mail me if you

would like the list I gave the psychologist of all the " autistic "

things he does.

> Hi all ,

>

> I have a question. I took Liam who is 3yo for his first evaluation

yesterday. I haven't taken him to anyone else to get a diagnoses but

I wanted to see what the lady said at the evaluation. We have been on

the diet for 6 months now and although he reverts every once in a

while (i think due to some hidden source of gluten) he makes eye

contact now with even strangers. I noticed this about 3 weeks ago

when I took him to church. He even acknowledges them with a smile and

seems generally glad to see people. I am so happy that this diet is

working for him and he is getting better every day, but my question

is this; they therapist asked me what I thought he might have and I

said that I have done extensive research on autism and found that he

had most if not all of the symptoms. The therapist kind of gave the

other therapist a look and then they both agreed that he DIDN'T have

autism and that sometimes to find an answer parents will nit pick at

behavior problems to find one. Basically that I was just looking at

him and assuming he has autism because that is what I want to see.

>

> Well fact of the matter is, I looked at every other avenue BUT

autism. I searched for any clue as to his behavior and came to the

conclusion that he might have autism. I didn't want him to have it at

all. I still don't but I still think he does. He has all the syptoms

or used to , but the lady told me that autistic children are always

hyper and run around hard to contain. Well that has never been Liam

and it isn't what I have read either. Alot of them sit quietly like

he does. A lot of them don't get mad and have tempertantums instead

they ignore the situation and glaze over. That is what he does when

he has a problem he can't handle he goes into himself. The therapist

told me herself that she isn't qualified to diagnose autism but if

she felt that he had it then she would send me to someone who is.

>

> Ok now my question (for real this time hehe) Do yall think I should

go and have him diagnosed? I am just wondering if he does have autism

is the therapy different or does it not really matter if I get

a " real " diagnoses or not. I am just concerned that he will not get

the proper treatment if I don't get him diagnosed, but on the other

hand if he still will. I really don't want to go through the head

ache of staring a doctor in the face and tell him well 6 months ago

before the diet he was autistic and getting a blank stare, like I got

yesterday.

>

> LOL it was funny every symptom the lady was telling me autistic

children have I told her well I do have to put a lock on the door he

cant get out of, but hey he didn't line the trucks up in a row so he

doesn't have it. Ok so I can't get him out of bed without opening the

shades first or he gets upset, but he isn't running around the room

like a wild child so he doesn't have it. Another thing Mrs. Therapist

he seems to like licking his hands and rubbing the wall for hours at

a time, but he is making eye contact so he doesn't have it.

>

> Thank you for all the help yall have been already on helping to

heal my little boy,

>

> Melinda B.

>

>

>