Do I bring a list or will it influence doctor/diagnosis?

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We don't have a diagnosis (waiting to see the pediatrician next week to get referral for pediatric psychologist, which I suspect will take another 1-2 weeks to schedule) other than a "mixed receptive / expressive speech disorder" and "expressive speech disorder" from the regional center (we're in California).

But through reading and research we're bracing ourselves for a ASD diagnosis for our 4YO son.

I started making a list of observations. It's quite a long list (of 47 observations) and I won't flood you with it unless someone want to read it... I put some samples under different "groups" below.

My question is: when I see the pediatrician do I want to bring this list, and when we get a psych referral do I want to share this list or will it influence a diagnosis one way or another? I try to remain objective in my observations and I hope the way I've written the list is objective.

Thank you for your feedback!

Behavioral / Neural
lines things up, for example 2 chairs side by side, a row of cars side by side.
covers things up repetitively and inappropriately, for example, covers a water cup with his hat, covers a stool with his blanket, covers a toy with his hat.
scratches/rubs his feet with his fingers/toy car. likes his feet scratched/rubbed (will request it by saying "ticklish ticklish").
doesn't do this or rarely does this now: he used to walk on tip toes at least once (that parent can observe) a day.
he loves water - running hands under water - the sensation of water (no fear of swimming pool but we didn't take him for swimming lessons).
recites/acts out parts of videos he has seen on YouTube but preferentially does these: claps his hands and drops on the floor (on his back) while kicking his feet and laughing; he does this when he's especially excited.

Conceptual
artwork has degree of repetition [sample of his 1) pencil work 2) paint work 3) colllage work].
Mimics a children's tv program segment with an artist drawing the shapes but does not draw concrete object (for example: if I ask him to draw an apple he does not respond and does not appear to understand).
Appears unable to process questions, still doing by rote memory and therefore gets it wrong some times: "How are you?" "I am 3 years old." "How old are you?" "I am fine thank you."
He does more arrangement of structures than playing with them: putting a stool next to a scooter and the top part of an old baby music mobile next to these.
He plays with structures (like the detached top part of a baby mobile) that aren't toy like; he does not pay attention to the individual soft toy parts hanging off the mobile like stuffed toy birds that I would expect to catch a child's attention.

Social
he is very tactile; enjoys closeness and touch and snuggling. To an observer and to parent he is very physically affectionate and appears happy and joyful.
When in speech therapy at home, he would sometimes look at himself in the mirror while interacting instead of focusing on Megan directly in the interaction.
Will initiate affectionate gestures; wants to climb on you to sit in your lap,will look at you and smile.
He has grown more used to people and appears to enjoy the presence of company in the house.
When he says ""play with me"" he means to have me nearby but not necessarily actually playing ""with"" me. It seems that he wants company but he does his own thing.

Speech & Language
repetitively verbalizes "vaccum! vacuum cleaner!" and uses different objects in vacuuming motion.
repetitively verbalizes "bye bye tony" (our neighbor) when he is not in view, for example, when we are in the bedroom or elsewhere in the house; may also substitute with other name of people who are not present such as "Colton" (a classmate who rides on his bus).
Most of his spontaneous utterances are not present moment descriptions but recalls of an advertisement, part of a song, a YouTube video portion (him trying to mimic what they said), and phrases or words that are not related to what is happening right now / around him.
Is able to request familiar items: "I want to eat yogurt please." "I need diaper change."
Is able to observe and comment about familiar tasks: ""I build it"" ""you did it."" but here is not showing concept of self: says ""you did it"" instead of ""I did it""
He will say names of people he has met but aren't present. Such as a husband's friend ""uncle andrew"" neighbor ""uncle tony"" a classmate ""colton, camilla"".

I think its a great idea to bring a list cause its so easy to forget things until you leave the office.
The diagnosis is a subjective process and it will depend on how many boxes you tick. So yes the more you have the more it will influence diagnosis.
The process if done by a psychologist using the ADIR and the ADOS will be very thorough - most of the things you have listed will be asked in the interview. - However still bring the list and cross things off as they come up and mention any that have not been covered at the end of the interview.
A paediatrician will not use the above diagnositic tools and will see the child for much less time. If the paediatrician is fairly certain then they will not need to go into all the detail of the full assessment. If there is uncertaintly but some concern that there is an ASD then they will refer on for further more comprehensive testing.
When you state that your son doesn't have a concept of self and gets confused with I / you - that is called pronoun reversal and is quite common in ASD.

good luck, you are on the right track if you are concerned its best to find out now as intensive early intervention therapy can in many cases be highly successful and will give your child a greater quality of life and ability to adjust, as well as parent support which i am sure you will need as well.

I would definitely bring that list if I were you. So far as I understand this, diagnosing a 4-year-old with AS is extremely difficult to do, and anyone who tries is likely going to need lots of your input.

Of course it's going to influence the diagnosis -- hopefully toward the most accurate one possible. I don't think you need to worry too much about biasing the diagnosis. Those all look like objective observations to me -- and not ones made to tip the scales.

Good luck!

It is good to have the list so you don't forget anything, but if your doctor is anything like some of mine, he won't listen to or read the entire list. So I think you should prioritize. Mention the most disturbing behaviors first. I don't think you need to mention much to the pediatrician to get the referral; he should give you the referral just because you are concerned. Sometimes during the psych referral, they like to observe your child first without being influenced by what you have to say, but eventually you will be asked specific questions and you can bring up your concerns then.
By the way, I love having my feet tickled. My sister and I have always loved it; we used to tickle each other's feet, and neither of us is autistic. My NT daughter loved to crawl around in the shower when she was 6 months old.
My son was very cuddly as well. He is PDD-NOS but he never warmed up to strangers. When my son was in speech therapy, they wanted him to look into the mirror so he could make sure his mouth had the correct shape. However, not looking at the person who is talking to him is a definite symptom. Some of the repetitive behaviors change over time. He might do something, like walk on his toes, for six months, and then later another repetitive behavior will emerge. My son used to rub his nose a certain way for awhile.
Some of your son's behaviors surrounding play may be considered normal but delayed development. For example wanting you to watch him play is normal behavior for a 2 year old.
The speech and understanding seem to be the most obvious problems so I would focus on those first, then the repetitive behaviors, and then everything else.
Good luck!

Rejected: this doctor did think something was wrong (she referred us to the regional center when our son was 2) and I'm hoping that when she sees him again she will say "whoa...." -- we changed to a pediatrician who's closer and this ped kept saying "he's just a late talker" and I wasn't going to have that anymore.

I love my feet tickled too (and I'm not autistic) but I'm talking about hard nails on the bottom of the feet scratching. My son uses the word "tickle" but he really means "scratch" and I can tolerate it but I can't stand scratching for too long. Also I figured out last night that scratching the bottom of his feet acts to calm him down. We tried doing this when cutting his hair last night (a task that causes a meltdown before and during the event 100% of the time) and he was able to stop screaming and crying and flinching as if he was in pain; scratching his feet almost has an effect of a pacifier (something he was dependent on at a younger age).

RainingRoses: Yes I meant "bias" the assessment in some way, good call! I've been reading threads here and am learning that at this young age the diagnosis can be very difficult. I suspect (non-licensed medical opinion obviously...) that my son may be high functioning. It's one of the reasons why his current special ed teacher thinks the world of him and tell us that our son is always so happy and helpful (and he is indeed), and the speech therapist who spent about 5 man hours assessing him and still trying to complete the assessment tells us "he's probably snowing a lot of adults with his happy disposition".

Sharkgirl: Thank you; I realize the importance of "early" intervention and that's why even when we don't have a diagnosis, we have our suspicions and my husband and I decided that we are going to move ahead as if our son will receive the diagnosis and start proactively learning what we must learn to give our child the best shot at a productive future. We feel scared as hell... but thank god I found this forum.

Definitely bring the list. That's what we did. The examiner should ask about these things anyway and you don't want to miss anything.

Yes, bring the list. I brought my list to all different doctors at first. I answered all their questions, then gave them the list.

I went into the neuropsych testing convinced my son was bipolar. Previous suggested dx by a psychologist, play therapist, psychiatrist and pediatrician were bipolar, ADHD, OCD, ODD, and a few others. I have NEVER EVER considered an ASD. ASD was mentioned in the emergency room where I took my son because he said he was going to kill himself when we get home (made U-turn to ER).

I had to wait a month between completion of neuro testing and the meeting/report. I was completely shocked. I can't even describe it. I was bracing myself for 'bipolar'. I was completely prepared for bipolar. I had already wrapped my head around it. But...that wasn't the dx.

The lists I brought were very helpful for both me and all the docs we saw. It helped me remember everything and condensed all the concerning behavior for the docs.

We had so many different dx, even bringing the same list to different docs, so...no, it won't sway the dx.

Wow... it sounds like depending on who you go to, you may get a different diagnosis!

We've ruled out deafness as possible cause of speech & language delay; my son isn't prone to inner ear infections.

When I read evaluations my son has had so far, all have made a note about his participation and anxiety.

I'm questioning why hasn't a professional suggested evaluating the difficulty in my son getting evaluated. This difficulty itself should suggest that something's going on.

This gets into a follow-up question: I've been told to take my son to a pediatric psychologist by a speech therapist, and then a pediatric neurologist by another. I'm wondering should I ask for referrals for both (not sure if the pediatrician would agree either)?

Bring the list, the categories you have come up with are good.

You may already have done this but I would suggest listing the items under the category in declining order of relevance/importance in case the professional just skims through it and doesn't read everything..

That's a great idea, M&S, I will do that!

I brought a list. I was doing research (I work with some special needs children), and I found asperger's disorder. My daughter has had a variety of pretty serious struggles all through school and when I read the list of symptoms...she had so many of them. It fit. She'd been diagnosed with adhd as an 11 year old, but the psychologist and therapist agreed that this wasn't the only issue. They wanted to do further testing so I took in the list of symptoms and showed it to the person doing the testing, just so she could know what I thought and had observed. My daughter went through 3 different questioneres, and 6 hours of interview...so I know they did a thorough job...but they agreed with what I hit on. She did have the symptoms, and they could see that as well as I could.

Great idea re: one pager priorities list, I will do this and our ped appt is tomorrow. I will share what happens!

Thank you so much for your helpful input!

Update from our pediatrician appointment this afternoon:

The pediatrician diagnosed my son with autism.

She is going to write a referral for audiology (even though she suspects the test will come back normal) as well as a neurology referral.

She wants to start him on OT and speech out of a local hospital that she is affiliated (part of a hospital based physician network). I'm still not sure about this part -- whether this means I have to drive him to the hospital multiple times a week? It doesn't sound like they do treatments in the home setting. The network will not reimburse me for the speech therapist I'm currently using (and who has developed an excellent rapport with my son).

I called the mental health network part of our HMO to get a psychology referral for an evaluation. So far I haven't been impressed with the names I was given.

When I looked them up on the internet, 3 out of 5 names never list autism in their list of specialties. 1 psych was certified in 2006 -- relatively young (doesn't mean she's not good, just means she would have less than 10 years worth of patient experience and therefore limited in the # of patients she has seen/evaluated). Another one had a message and I didn't leave it, I couldn't find any data on her on the internet. I'll call again tomorrow for more names.

The pediatrician didn't mention applied behavior analysis treatment, and I suspect it's not covered.

I was going to say "yes, take the list", but I see things have moved on now.

What I'll say now is that I don't think you should dismiss any professional because they're young or recently trained. If anything, I'd say that they are likely to be more informed and up-to-date in understandings of autism and how to help tackle particular difficulties an individual is having.