autism diagnosis help please

[worm761]

DS is 11 yrs old. i am almost positive he is somewhere on the autism spectrum. he is very high functioning but it has been suggested to me several times by different people that he be tested. his pediatrician is sending us to a neuro-psychologist (sp?). our appointment is next week. we have waited forever for it and it is finally here. now is when i have decided to freak out. i am trying to explain to DS that he is going to the doctor but not the one we are used to. i have no idea what to tell him is going to happen. ???? can anyone tell me? i have no idea. also anything you may suggest that i take to the doc? they sent me a paper and it said report cards and such. any suggestions there would be great! please just let me know what i am in for. thanks so much...

 

[pcparamedics01]

DS is 11 yrs old. i am almost positive he is somewhere on the autism spectrum. he is very high functioning but it has been suggested to me several times by different people that he be tested. his pediatrician is sending us to a neuro-psychologist (sp?). our appointment is next week. we have waited forever for it and it is finally here. now is when i have decided to freak out. i am trying to explain to DS that he is going to the doctor but not the one we are used to. i have no idea what to tell him is going to happen. ???? can anyone tell me? i have no idea. also anything you may suggest that i take to the doc? they sent me a paper and it said report cards and such. any suggestions there would be great! please just let me know what i am in for. thanks so much...

My son has HFA- High functioning Autism. They will do a battery of tests. Carr's test is one that comes to mind a long with some others. They will see how he plays. If he likes to spin things, walks on the balls of his feet, stims, repetitive behavior, rituals. Additional testing will be questions they will ask you. Example: How are his self help skills, does he play alone, does he have little regard to people around him etc.

Reports cards have nothing to do with Autism. They can be high functioning and blow the test scores out of sight. Do not bother to bring them. The neuro will only ask you how he is doing in school.

Do not freak out they love to diagnose the A word lately it is easier than saying ADD these days or NOS. Perhaps he is on the spectrum however, many tend to diagnose Autism like they are giving out candy. Listen to your heart a Mother always knows if there is something wrong. I did! Ped's even when he was little said all the milestones are fine and there is nothing wrong. However he lacked speech. The ped's would say boys sometimes speak later. I still knew there was always something not right even though they said nothing was wrong.

Like you said you believe he is on the spectrum. Do not stress over it is only a word and a diagnosis. The main thing is intervention!!! It is the key. Get him the services he needs as soon as possible. Do not worry about the diagnosis. The District-school system will have to serve him the same way as they would as ADD or ADHD etc. PM me if you need more info! Good luck. You will be fine.

 

[BeckyScott]

First off, big hugs.

I don't know what you should tell your son. Ours doesn't really know any better, I guess he's just been evaluated so much it doesn't phase him anymore. I do know that when we had our first full-blown eval, it wasn't just the psych. They also did hearing, speech, vision, a general physical... they didn't say anything about that until we got there, so if he hasn't had that done, they might be doing that too. I guess what I would tell him, is that it is a special doctor, and that they just want to see how his coordination is and how smart he is, and that he doesn't need to worry about doing anything "right". The "psych" part of it, they will try to disguise as just normal conversation, and the rest they'll format as game-playing, so it's not like a test, not the kind he would think anyway.

Also be prepared, for ours they always pulled me out of the room and asked about 2 1/2 million questions.

I would take any relevant medical records- the "big stuff"- and anything like grade cards or comments from the teachers. They're going to want to hear as much history as they can, but you just do the best you can. I couldn't remember how old our son was when he started crawling! He was late I remember that much... you know, they'll figure it out anyway.

 

[BeckyScott]

LOL! We were typing at the same time.

Do not stress over it is only a word and a diagnosis.

He will be the same child he was before the diagnosis. I remember being told almost the same thing. "He's the same kid he was last week"

Please keep us posted.

 

[pcparamedics01]

LOL! We were typing at the same time.



He will be the same child he was before the diagnosis. I remember being told almost the same thing. "He's the same kid he was last week"

Please keep us posted

You said it Becky!!!

 

[worm761]

thanks for all the good thoughts. i actually find him easier to handle than a "normal" kid. he is my only. i actually remember telling his first doctor that he was either deaf or autistic when he was 4 months old because he just didn't respond to sound. he still doesn't sometimes. he is very loud though. every time we have moved and had to find a new doctor, the new doc always wants to check his hearing out. a couple times. he has been evaluated through the school. his IQ, which i know means little, was 136 when he was 8. but he doesn't qualify for the gifted program because he tests different everytime you test him. one day he will be high in one thing and low the next.
right now he is just making random noises. or rather they are random to me, not to him. i don't understand him. lol.... his pediatrician diagnosed him with ADHD about 2 years ago. she agrees with my thoughts on the autism. she thinks he will have a diagnosis of aspergers. the only reason i want the diagnosis is because he goes to middle school this year and i really don't think he can handle changing classes. i think he may need help in that area and maybe a few others. the only way to get the IEP is to have a diagnosis. don't like it but that is the way it is. he had wonderful teachers and a great guidance counsler and principle in elementary school that really worked with us and did what was needed without fuss. but our middle schools are so full that he will just be another body there and i know i cannot let that happen.

 

[pcparamedics01]

thanks for all the good thoughts. i actually find him easier to handle than a "normal" kid. he is my only. i actually remember telling his first doctor that he was either deaf or autistic when he was 4 months old because he just didn't respond to sound. he still doesn't sometimes. he is very loud though. every time we have moved and had to find a new doctor, the new doc always wants to check his hearing out. a couple times. he has been evaluated through the school. his IQ, which i know means little, was 136 when he was 8. but he doesn't qualify for the gifted program because he tests different everytime you test him. one day he will be high in one thing and low the next.
right now he is just making random noises. or rather they are random to me, not to him. i don't understand him. lol.... his pediatrician diagnosed him with ADHD about 2 years ago. she agrees with my thoughts on the autism. she thinks he will have a diagnosis of aspergers. the only reason i want the diagnosis is because he goes to middle school this year and i really don't think he can handle changing classes. i think he may need help in that area and maybe a few others. the only way to get the IEP is to have a diagnosis. don't like it but that is the way it is. he had wonderful teachers and a great guidance counsler and principle in elementary school that really worked with us and did what was needed without fuss. but our middle schools are so full that he will just be another body there and i know i cannot let that happen.

Angela,

Get the diagnosis. Trust me. I have had an IEP since my son was 4. I have never had a diagnosis until last year. My son in 9. I still had an IEP in place from pre-k on. We have also spent thousands of dollars to have an advocate in every IEP meeting to ensure he gets everything he needs!!!

 

[xoprincessmomxo]

Hi everyone!

I have been doing a little research over the web on high functioning autism (especially aspberger's) and thought that maybe some of you with personal experience could help me out a little.

My 3 1/2 year old niece has always been a little "off". She did not begin speaking untill she was over 2 (though when she started it was in complete sentences) and even now we have trouble understanding her. She repeats a lot of what she says over and over as well as talks to herself almost. She is Extremely shy, to the point when there are children around that she does not know, she will stand in a corner and not talk. She is varied on her eating habits. Somedays she will eat whatever is in front of her (on her good days when she is usually acting more "normal") but on somedays will only eat peanut butter sandwhiches. She is obsessed with cleanliness and routines (OCD without the diagnosis). She has regressed with her potty training as well. She was completely trained for roughly a week and a half, but for the last 6 months or so she has worn a diaper. She does take it off to go have a bowel movement on the toilet but urniates in the diaper. When you take of the diaper and try to put on her "big girl panties" she screams and will continue screaming for a diaper for hours! She acts as though the panties would burn her if they touched her skin! Her mother is beside herself, but seems oblivious to the fact that this could be a mental disorder! I could use any and all help!!! I feel bad for both my niece and my sister as I am afraid if it is autism, they need to get help now! (the only Doctor diagnosis they got was "constipation" ) THANK YOU!

 

[KirstenB]

xo princess, as you know, you're in a "touchy" position. You don't want to alienate the mom, but you know this child is different. As a mom of a recently dx'd autistic toddler, here's my 2 cents. You need to get mom to buy into an evaluation. ONce you do, one place to go would be your local children's hospital, specifically the Developmental Peds Dept.

Another, thought, your niece appears to have had speech delays. Every county/city in the country has some form of Early Intervention which is 0-36 mths. Did your niece receive speech therapy? IF so, that's another avenue to follow up.

Finally, your sister may be already getting her therapy and hasn't told you. I've been very hesitant to share dd's dx with our family. Her speech therapist says she isn't autistic, our Children's Hospital says she is. I told my best friend, my youngest sister the whole deal. She got very upset, and that in turn got me very upset. IMHO, my baby sister would be more receptive than my other siblings. So I haven't told any of them, other than dd is developmentally delayed.

Believe me, I do appreciate the sticky situation you're in, and I'll pray that things work out for your niece. You're a very caring aunt.

 

[xoprincessmomxo]

xo princess, as you know, you're in a "touchy" position. You don't want to alienate the mom, but you know this child is different. As a mom of a recently dx'd autistic toddler, here's my 2 cents. You need to get mom to buy into an evaluation. ONce you do, one place to go would be your local children's hospital, specifically the Developmental Peds Dept.

Another, thought, your niece appears to have had speech delays. Every county/city in the country has some form of Early Intervention which is 0-36 mths. Did your niece receive speech therapy? IF so, that's another avenue to follow up.

Finally, your sister may be already getting her therapy and hasn't told you. I've been very hesitant to share dd's dx with our family. Her speech therapist says she isn't autistic, our Children's Hospital says she is. I told my best friend, my youngest sister the whole deal. She got very upset, and that in turn got me very upset. IMHO, my baby sister would be more receptive than my other siblings. So I haven't told any of them, other than dd is developmentally delayed.

Believe me, I do appreciate the sticky situation you're in, and I'll pray that things work out for your niece. You're a very caring aunt.

Thank you so much for the reply. It is strange, because my sister and I are so close (in fact we are in business together) but I am scared to death to bring this up. More for the fear that I could be right. I just think that she and her husband have ignored that something might be wrong for way too long.

She has not been getting speech therapy. I think we have all for so long just got used to her strange speech. She is VERY babyish for her age and her talk at times is almost a cartoonized ideal of what cute toddlers speak like. Which would not be so strange except for all of the other "traits" that she has. The rough thing is her father, who is an incredibly strict ex history college professor who is intent on raising "super children". I think that he is the most in denial that something is wrong. And I wouldn't dare talk to him about it.

And thank you again for your kind comments. I worry that I am not the caring aunt, and the aunt who is being too nosy for my own good.

 

[BeckyScott]

I don't know how it works in other places, but here the Parents As Teachers program is the "gatekeeper" for the early intervention program.

Sure, you can call early intervention directly, but they hook you up with a PAT lady for the first visit. The PAT ladies are trained to spot things that just don't look quite right, and to nudge you gently in the right direction. They have a direct hook-in with the right people to do further testing or to get started with therapy. Your community should have a preschool for special needs kids, which would be where a 3 1/2 year old would be steered, and they do the testing themselves. Kids can go to that preschool if there are delays, they don't have to have a diagnosed disability to attend. There has to be some kind of program somewhere close by, it's pretty much required by federal law.

With the PAT ladies, if there's nothing to report, they just show up every month and chit-chat, no big deal. So it's not like PAT is "only" for kids that have a problem or parents who don't know what they're doing. That might be a less offensive option for your sis. The local school board office would be able to tell you if there is PAT in the area or how the preschool program is set up.

 

[worm761]

just wanted to post back....our first appointment with the neuro-psychologist was today. it was just an interview. the actuall testing will take 5 hours and DS is ADHD so that is being broken up into smaller tests. the doctor mentioned aspergers one too many times so i am pretty sure that is what our final diagnosis will be. it is also what his pediatrician feels it is. she just sent us here to get the diagnosis.

anyway. thanks for all the support and answering questions. i feel better now that i am on the right path. it also feels good to know that i was right. i told DS's first pediatrician when he was 4 months old that i thought he was autistic. couldn't get that boy to respond to noise, look at me. nothing. just thought it was wierd. doctor told me not to worry. that he was too young to diagnos. i feel better now. thanks.