Off Topic - Question for Parents with Autistic Children

[aprylann28]

Hi,

This is very off topic for Disney so if I am not allowed to have posted this here, please feel free to remove it. I am asking here because I have searched google and several other places for an answer and cannot find one. And I know there are several parents of autistic children on these boards, so I was hoping maybe someone here could help me out. But as I said, if I should not have posted this, please feel free to remove it.

Anyway, my son just turned 3 in January and his doctor suspects that he may be autistic. The only developmental problem he has is a speech delay, but there was something about the way he was jumping around the doctor's office at his last check up that makes her think he might be autistic. So she referred us to the the Department of Developmental and Behavioral Pediatrics at our local Children's Hospital for testing.

After filling out some paperwork, they have scheduled me for three separate appointments for the testing. The first one is a Diagnostic Interview for Adults only. Basically I'm supposed to go to this appointment without my son.

I was just curious if any parents of autistic children had to do this same kind of test and what they can determine by interviewing me and not my child. It just doesn't make sense to me that they would not want to see my son at all three appointments.

Any advice, suggestions, or experience will be greatly appreciated.

Thank you in advance for your help.

[Reddy]

hmmm it could be that they want to ask you questions about him without him having to stress about it or wonder what is going on
if your replies are where he is more hyper then austic then they may say he isn't austic at all & cancel the others.

getting background info so you don't have to fill out the paper work & deal with him at the same time

[wdw4rfam]

Yes, I did do an interview first. They try and get as much history and questions asked without interruptions. Once you bring your son they are more interested in observing so they dont want to be asking the questions then. I also thought my son ONLY had a speech delay until his appt. Then I realized when they put dry rice in his hand, and he started gaging that there were some sensory things too. Then I also never realized his fascination with spinning objects were also a sign. But don't stress too much over a diagnosis. They labeled my son autistic and with 2 years of therapy told me he would never talk. I refused to give up and long story short.....he is now 11, and has a new diagnosis of aspergers and is now in therapy because we cant get him to STOP talking Good luck.

[Fort Bordeaux]

Yes I had to have a meeting without my son. Why because there is a ton of questionnaires to be filled out. My son was officially dx at 2.5 and every yr we go thru the process of it all. I have gone they many specialist before I found one that I love and trust. My son is almost 5 and highly functional. Please feel free to email me with any ?s at missmilamagic@yahoo.com it's all so stressful but remember you are not alone. Hugs

[DLgal]

Totally normal. Most Autism rating scales at that age rely mostly on parental surveys and interviews and only partially on direct observation. They need to know hoe your child is at home, out in the community, in groups with other kids, etc. They can't get that without asking you.

What I will stress is the following: Answer every question 100% honestly. Don't be afraid to tell the truth.

Most of these questionnaires take 30-60 min to fill out. They want you to be able to concentrate and discuss things without interruption.

[brymolmom]

I did not have a separate meeting, but had a HUGE questionnaire to fill out. At 3, YOU know your child best. And with speech delay, he cannot even speak for himself - so OF COURSE a large part of the evaluation would be questioning you about his behavior.

For example:
You likely know if he is very repeitive (can't really figure that out for sure in a half hour dr. appt).
Only you know if he is resistant to change (the whole thing about being in a new doctor's office is change, so can't really tell the difference in his behavior).

And there are multitudes more that they will ask. I think it is awesome they're giving you and entire appointment without your child. I can just imagine you child having an especially good (or bad) day on the date of the appointment and you thinking 'but he isn't always like this'.

Just be 100% truthful and go from there.

[kandb]

It's hard to say why the doctor suspected him autistic because he was jumping around the office. I think to throw that "suspected diagnosis" out there to a parent seems wrong to me. There has to be alot of testing done before that diagnosis can be made. That being said, did the doctor ask you about your sons eye contact, does your son do repetitive things, does he arm flap, does he get fixated on certain toys or parts of the toys? Do you suspect an issue with your son or is just his speech delayed. We had a doctor suspect my son of autism when he was 2 1/2. He did get alot of therapy and today he is in 3rd grade with no help (except OT for his hand-writing). He is very social and loving and we do believe the therapy did "cure" him. I remember the time of going and buying books about autism and having alot of worry about it. I did really work hard on making my son have eye contact. I would put him in the bath and do silly things or sing songs so he would look at me and connect.

[twinboysmom]

Hi OP. Both of my boys (3 year old twins) have autism. We saw a pediateic neurologist wth the boys at age 30 months (he thought they just had a developmental delay then) and then when I brought them back at 36 months we received the autism diagnosis (I thought they had autism for over a year). We didn't have a lot of testing like a previous poster described. He listened to us at 30 month visit, asked some questions, watched the boys walk and interact in the room. When I returned 6 months later I knew they had autism, asked for the diagnosis (for insurance reasons mostly). He talked to me for a few minutes, evaluated them for a bit and then we were done.

IMO, the most important thing you can do is get him evaluated for therapy (speech and occupational). See what the therapists say. And push for as much therapy as you can receive/afford. I would not wait on this. And I agree with the others, be truthful. Write down things to help jog your memory such as his major milestones, how he interacts with other children, does he play with toys appropriately. Also does he line toys up frequently, focus on certain types of toys (like trains, cars, etc). Can he stack blocks? How does he let you know his needs? Does he point? If he is in child care speak with his teacher and see if she has any specific points of worry. Also, compare his development to your other children, specifically your boys.

I sincerely hope that your son is strictly speech delayed. He is only a couple of months younger than my boys so if you have any specific questions, need some more information, that type of thing just send me a pm. I have had some remarkable breakthroughs with my babies the past few months and would be glad to offer any guidance that I can. Good luck.

[Schmeck]

Originally Posted by aprylann28

Hi,

This is very off topic for Disney so if I am not allowed to have posted this here, please feel free to remove it. I am asking here because I have searched google and several other places for an answer and cannot find one. And I know there are several parents of autistic children on these boards, so I was hoping maybe someone here could help me out. But as I said, if I should not have posted this, please feel free to remove it.

Anyway, my son just turned 3 in January and his doctor suspects that he may be autistic. The only developmental problem he has is a speech delay, but there was something about the way he was jumping around the doctor's office at his last check up that makes her think he might be autistic. So she referred us to the the Department of Developmental and Behavioral Pediatrics at our local Children's Hospital for testing.

After filling out some paperwork, they have scheduled me for three separate appointments for the testing. The first one is a Diagnostic Interview for Adults only. Basically I'm supposed to go to this appointment without my son.

I was just curious if any parents of autistic children had to do this same kind of test and what they can determine by interviewing me and not my child. It just doesn't make sense to me that they would not want to see my son at all three appointments.

Any advice, suggestions, or experience will be greatly appreciated.

Thank you in advance for your help.

There's a whole DISAbilities community forum on the Dis, BTW.

[MinaFemme]

My son was diagnosed with mild-moderate autism at 21 months old through Early Intervention 7 months ago. I contacted them because of his speech delay, but other signs were pointed out to me. He has come VERY far in the past 7 months with the therapy provided by EI, he receives ABA, speech and OT therapy. Some professionals suspect he may "outgrow" the diagnosis, and last night an urgent care doctor told me he talks a lot for his age (she never met him and doesn't know he has ASD).

When he was first evaluated, they asked me A LOT of questions, and I had to fill out a lot of paperwork about him. He was with me, but most of the interviews were with me even though he was there. They get a lot of their info on your feedback.

[aprylann28]

Thank you, all, for all the wonderful advice and experiences. Now it makes sense why the doctors would want an interview with just me first. I do know him best, and it would be easier to talk without having to watch him at the same time. He had an evaluation at a preschool earlier this week, and they also think he may be autistic, so they are going to begin testing as well, and then coordinate with our children's hospital after he has his appointments there. I will post updates on his status as I find things out. Thank you again to everyone.

[jodifla]

Originally Posted by aprylann28

Hi,

This is very off topic for Disney so if I am not allowed to have posted this here, please feel free to remove it. I am asking here because I have searched google and several other places for an answer and cannot find one. And I know there are several parents of autistic children on these boards, so I was hoping maybe someone here could help me out. But as I said, if I should not have posted this, please feel free to remove it.

Anyway, my son just turned 3 in January and his doctor suspects that he may be autistic. The only developmental problem he has is a speech delay, but there was something about the way he was jumping around the doctor's office at his last check up that makes her think he might be autistic. So she referred us to the the Department of Developmental and Behavioral Pediatrics at our local Children's Hospital for testing.

After filling out some paperwork, they have scheduled me for three separate appointments for the testing. The first one is a Diagnostic Interview for Adults only. Basically I'm supposed to go to this appointment without my son.

I was just curious if any parents of autistic children had to do this same kind of test and what they can determine by interviewing me and not my child. It just doesn't make sense to me that they would not want to see my son at all three appointments.

Any advice, suggestions, or experience will be greatly appreciated.

Thank you in advance for your help.

Just as an fyi: Children with language disorders are often misdiagnosed with autism. Be sure you get a differential diagnosis. They should look at EVERY possibility, not just an autism checklist.

http://eideneurolearningblog.blogspo...used-with.html


Late-talking children often can be distinguished from autism because of their normal affiliative or social drive and social mirroring ability. Their language strengths and weaknesses are also quite different been non-autistic late talking children and autistic late-talking children. Most mistakes are made when children are diagnosed with behavioral checkslists rather than a detailed professional assessments.

[heazer]

To add what everyone else has said, my son had a speech delay and was evaluated at about 2 1/2, and scored borderline for Autism. He did meet the criteria for Sensory Processing Disorder at that time. After he turned 3 he was evaluated again to see how he scored, and did meet the ASD scores.

The constant moving doesn't strike me as Autism, but rather Sensory....some kids seek sensory, some have adverse reactions to sensory, and some have a mixture. A lot of AU kids have Sensory, but not all Sensory kids have AU.

If your child is a mover and shaker, he may "just" have some sensory needs that are distracting him from speech development. Either way, no matter what diagnosis you get....early intervention is key. Embrace all of it you can. Our son didn't talk at all at 2 1/2.....now at 5 he never stops talking!