What to expect - 1st Neurologist appointment for 8yr old

[Monica1]

Hi, Im not sure where to start. My son began to struggle socially beginning in 1st grade. He has been in OT & PT for 15 months for fine and gross motor skill delays. He is currently in 2nd grade. At the 1st quarter conference his teacher brought up his autism??? I believe she thought I was aware he had it. She then backpedaled and said there's a broad spectrum and he seems to be handling it ok. She mentioned his monotone voice, no eye contact, rigid to schedules, has not made friends in class, anxiety, etc. When he had his 8 month check up at the pediatrician I asked to speak to him privately after the exam. As I brought up the teachers concerns and he interrupted and said yes, I noticed rigid speaking, etc.
So, we've been referred to a neurologist and have our initial appointment next week. I'm wondering what to expect and how I should explain or prepare my son? He has extreme anxiety when his routine is changed & doing something new. He will miss school for this appointment so I need to prep him in advance. Thanks in advance for any advice.

 

[Judge]

Odd to suddenly realize that when my parents suspected there was something "different" about me in terms of socialization (or the lack thereof) their answer was apparently to keep me in the dark.

And I obliged them by never really asking what was going on.

I had to find out about such things only a few years before my mother died when she casually mentioned this over dinner. Pointing out that the doctors said I was "fine".

Though this was decades before Dr. Asperger's research went mainstream in the professional medical community.

 

[Bolletje]

Based on the consults I've witnessed where children were referred with suspected autism:
The neurologist will probably try to engage your son in a game to bring down his guard a little while she observes his interaction with you and herself. She'll probably give him some tasks to perform to assess his motor skills, talk to him to see how his verbal and conversational skills are. Maybe a game of memory, or letting him play with building blocks. Seeing how he responds when his game is interrupted, or whether he responds at all when being called.
She'll probably ask you questions about his early childhood and development, as well as some family history.

First consults are rarely used for extensive testing, mostly for establishing a base line and getting a feel for what your son is like. At least, that's the case in my country.

 

[Judge]

Based on the consults I've witnessed where children were referred with suspected autism:
The neurologist will probably try to engage your son in a game to bring down his guard a little while she observes his interaction with you and herself. She'll probably give him some tasks to perform to assess his motor skills, talk to him to see how his verbal and conversational skills are. Maybe a game of memory, or letting him play with building blocks. Seeing how he responds when his game is interrupted, or whether he responds at all when being called.
She'll probably ask you questions about his early childhood and development, as well as some family history.

First consults are rarely used for extensive testing, mostly for establishing a base line and getting a feel for what your son is like. At least, that's the case in my country.

If you were a parent, would you be completely transparent towards the child about the intent of such testing?

Or would this be fundamentally overwhelming for any 8-year old to absorb at one time ? Just wondering. Becoming self-aware as an adult wasn't easy.

 

[Monica1]

Thank you for the response. I guess I'm just nervous. When he had his first OT evaluation everything seemed fine but when we got into the car he burst into tears and said why can't I be normal? I don't want all these evals to crush his self esteem even further.

 

[Bolletje]

@Judge I honestly don't know how to answer that. I think complete transparency could be crushing, but you have to give some information. I loved doctors, hospitals and tests (the non-invasive kind) so it was easy to get me to go, but I think I'm the odd one out there.

@Monica1 I feel so sorry for your child, it must be so confusing and terrifying for him. Maybe you could call ahead to the neurologist's office and ask if they have some tips on how to prepare your child? Many hospitals in my area have information flyers on how to prepare for a visit, I recall the Pediatrics ward had some information for children that explained the purpose of their visit in a friendly way. I tried looking for some information online but couldn't find any for now. What country do you live in?

 

[Judge]

@Judge I honestly don't know how to answer that. I think complete transparency could be crushing, but you have to give some information. I loved doctors, hospitals and tests (the non-invasive kind) so it was easy to get me to go, but I think I'm the odd one out there.

I suspect in my own case I wouldn't have handled it well. Though at that age I was just a year or so away from my autism finally catching up with me, when my peers at school began to persecute me. Before that I perceived my childhood relatively pleasant and uneventful.

When he had his first OT evaluation everything seemed fine but when we got into the car he burst into tears and said why can't I be normal?

Exactly.

I'm a big proponent of self-awareness, but at an age where one can handle it in a more positive way. No telling what age that may be depending on the individual child in question. Surely a tough decision for most any parent of child thought to be on the spectrum of autism.

 

[Allicat]

Maybe approach it from the angle of "The doc is going to see what things you are good at and what things you might need some help with, so some of the things he asks you to do may be really easy and some of them might be harder."

And share the results with him, but in at an 8 year old, concrete level. Something like, "The doctor noticed you're good at numbers, but you find words harder to understand," or "You're great at making pictures in your head, you just need some help putting them on paper."

Lastly, remind him we all need help from time to time. Use an example where you needed help as an adult to do something might help get that point across. Or if he has a favorite book, movie or TV show, an example from that might be good too.

HTH

 

[Monica1]

@Judge I honestly don't know how to answer that. I think complete transparency could be crushing, but you have to give some information. I loved doctors, hospitals and tests (the non-invasive kind) so it was easy to get me to go, but I think I'm the odd one out there.

@Monica1 I feel so sorry for your child, it must be so confusing and terrifying for him. Maybe you could call ahead to the neurologist's office and ask if they have some tips on how to prepare your child? Many hospitals in my area have information flyers on how to prepare for a visit, I recall the Pediatrics ward had some information for children that explained the purpose of their visit in a friendly way. I tried looking for some information online but couldn't find any for now. What country do you live in?

 

[Monica1]

I'm in the US. I've looked all over online but almost all the info I find relates to children that are diagnosed at younger ages. I've been torn about even pursuing a diagnosis. It's not that I want a label. I just want to know how I can best help him.

 

[Mary Anne]

I'm in the US. I've looked all over online but almost all the info I find relates to children that are diagnosed at younger ages. I've been torn about even pursuing a diagnosis. It's not that I want a label. I just want to know how I can best help him.

Autism Support Groups for Families

Perhaps you can ask other American Parents? This link might help.