Joshua's Autism Evaluation

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betsy0040's picture
Joined: 03/28/08
Posts: 121
Joshua's Autism Evaluation

First I'm going to say that I don't have results yet, that will come tomorrow or Thursday. We could have opted to wait 4-6 weeks to get the written report (which we will still get) but we chose to get a phone call when they've made a decision.

I have to say I am surprised at some of the things they said. For instance (and this was a pretty big one for me) when he gets excited and sometimes when he gets upset but more often excited he gets on his knees and bounces up and down and will wave his arms. They called that flailing and made it sound like an Autism trait. Joshua is developmentally delayed and can't do much to indicated his excitement like he can't talk so to me that is something he does to communicate which they did agree with but also called it strange/weird behavior. I happen to disagree with this. He does have sensory issues, the reason we sought the diagnosis in the first place, we sought it before he got his other diagnoses. We decided to go through with it, figured it couldn't hurt and his therapists agreed so we did.

I know that I could just be in denial if he gets diagnosed but I really do disagree especially about the "flapping". They did say they would take into account his developmental delay. His chromosomal disorder one of the symptoms is Autistic tendencies so it's not surprising that he has some sensory issues, I don't think he belongs on the spectrum.

Here's some other things we talked about. There was a Dora Backpack toy where you pressed the smile on the front and it sang or said things. They talked about the fact that he kept pressing it even when it was already going. The fact that he's not pointing but again this goes with his global developmental delay, they did like that he was reaching for things as a form of gesturing. The fact that he doesn't have any friends yet but I kept telling them that he is getting more and more interested in the other kids at school. He is very social though and they did see that. Now I just have to hope I told them everything and wait.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I say follow your instinct. If you don't think he is really autistic, but that it is the traits of the chromosomal disorder coming out to look like autistim then you know your child best. But having a diagnosis in the future school years could work in your favor to get services his chromosomal disorder may not. YKWIM? You don't actually have to tell anyone if they do give him the diagnosis if you don't believe that is it. And it is TOTALLY normal to have a LOT of different feelings when you get that autistism diagnosis.

Let us know what they say.

:bigarmhug:

betsy0040's picture
Joined: 03/28/08
Posts: 121

Thanks. I just don't want him to get the diagnosis if it's not the truth. Who knows what is his disorder and what isn't, yk? I honestly didn't expect to be considering it, we figured we were just ruling it out. Of course now I'm thinking of things I didn't bring up while we're there. Like they didn't ask about playing games, like peekaboo, which he does. He doesn't initiate but he does play and will keep playing. A lot of the things they asked he's just not there yet developmentally, I don't think that should be held against him nor does it mean he is or isn't. We did keep reminding them and they did say they would take into account his delays.

Joined: 05/05/04
Posts: 435

(((hugs)))

I think to some degree Angela's got a very good point - Autism gets so much coverage and stuff now so the funding is definitely there for services even if it's a slightly off dx.

Good luck.

betsy0040's picture
Joined: 03/28/08
Posts: 121

Yeah, I know. I did call this morning and talk to one of the evaluators about it and she said she would talk to the other person and get back to me. We are thinking about a 2nd opinion.

CamelNoodle's picture
Joined: 07/28/04
Posts: 908

I don't think the fact that he doesn't have any friends is a consideration. My kids all did the "parallel play" thing well past 2. My almost 3 year old son goes to other kid's houses and plays, but mostly he does his own thing (or follows the "big" kids around). My 6 year old did the same thing.

Good luck with everything.

betsy0040's picture
Joined: 03/28/08
Posts: 121

Yeah, she did say the same thing so I don't think that was really used. What am I most concerned about it is that it's their opinion, yk? Why should their opinion be so important. I'm just sorry we went now.

betsy0040's picture
Joined: 03/28/08
Posts: 121

Joshua's EI just called and said we can appeal the decision if he does get the diagnosis. She already has the name and number of the person to call to get that started. She also said we could talk to the psychologist at our school district this summer when we do our preschool referral. She said she's very knowledgeable and would be helpful.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Are they giving him a diagnosis based on their opinions or are they actually doing the ADOS and actual testing? If this is based on their opinion DEFINITELY go for a 2nd opinion. NEVER base an autism diagnosis on an opinion. And if I were to I would definitely go with the parents over the professionals.

betsy0040's picture
Joined: 03/28/08
Posts: 121

They were not able to do an entire ADOS, they started it but were not able to finish. Basically he isn't able to complete all of it where he is developmentally. They did do a CARS, not sure they finished it. I wasn't in the room, they asked for the parent who Joshua would not run to and expect to be picked up, that is DH. Then they also of course asked us questions, looked all of the forms and other paperwork we sent in so it is a collaboration of all of that. How do we know what is his disorder what could be Autism? I talked to his speech therapist about it today as well and she agreed that some of the things they talked about aren't solely Autism. She called this afternoon but I wasn't able to get to the phone and she said she had to go out to do a home visit and to call in the am so I will know more tomorrow morning.

I just did a search on CARS and it says for children 2 & up, he is 2 but developmentally he is 1. That's another issue I have with this, can you really diagnose a 1 year old with Autism? I tried to tell the evaluator that this morning, that some of the things he is just not developmentally able to do. Why would you even ask if he pretend plays when he's not able to do so many other things that 2 year olds do? I think he acts mostly like a 1 year old. He does not have tantrums or any "behavioral" issues. I really felt like they were digging, looking for something. I know their job is to ask questions but there are so many ways you can look at things especially when he already has a diagnosis, how do you know what is what?

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

I'm glad they were using those tests.

I want to preface this by saying this is only based on my experience with Dakota and watching my BFF go through her diagnosis with her daughter.

As far as knowing what is what is very difficult. My BFF IRL actually has a daughter that was diagnosed with autism. It was that diagnosis that actually ended up revealing she has a heart problem (they wanted to put her on meds but she needed a full physical which it was discovered she had a murmur...... you get the point). Anyway she now does not think it is really autism, but a genetic disorder that has autistic traits (she's currently working with genetics). I know she struggles with the same feelings you do. I also know she is thankful for some obvious and some not so obvious reasons for the autism diagnosis. I also know of someone else who has a genetic disorder with autistic traits and was diagnosed with autism. But I don't know the specifics. All that to say it happens quite a bit. I also know that for autistic kids they can't pretend. So they never develope that skill. Dakota never developed that skill until he started in DD pre-k and the autism program at our school (it took 2 years). I also know that 1 year old actually can pretend. It's not the make believe talking role playing type pretending, but they can. For instance Faith was pretending to drink from a cup (no she wasn't drinking from a cup when she started doing it), or bringing fake food to me to pretend to feed me type of things. Anyway, most autistic kids are actually developmentally delayed and they can actually be physically delayed as well. I also know for me when we got Dakota's diagnosis there were certain things that never bothered me so I never mentioned them. They actually noticed things I never did (such as watching the wheels on cars). Sometimes that's why they ask a lot of questions. And honestly if I could have had the diagnosis at one year old I would have gotten help for his stuff much sooner. As it was although I did get help, I didn't get as much as I would have if I had the diagnosis sooner.

Anyway, although I'm sure none of that was helpful, I hope something may have been. I just want to encourage you to follow your instincts. If you don't think it is autism then follow your gut. You know him best. And we are always here for a vent and a :bigarmhug:

betsy0040's picture
Joined: 03/28/08
Posts: 121

With Joshua's diagnosis there is possibility for MR, so how do we know if it's that or Autism? I know what you're saying and do appreciate it, Angela.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Thank goodness you understand. I know it is hard and my friend actually struggles with the same type of things. I know one of the current tests they are running may have MR associated with it. My mom actually use to work in a home as well. I know that MR levels vary. So some of the things he may eventually do, but he will just be delayed. And other things he may not get passed a certain age level. So a lot is going to be a judgement call for you, his drs, teachers, therapists, etc. and depend on his level of MR. If that makes sense. I use to go to work with my mom and hang out with some of the clients. They use to play dolls and pretend with me all the time. They were some of my best friends. I hope that helps.

betsy0040's picture
Joined: 03/28/08
Posts: 121

We can't know Joshua's future since he is the only one diagnosed with his exact type of disorder, all we know is what others with the similar disorder have. I just don't think it was fair what they tested him on, things that were clearly above his develomental level. The problem is it is a general test and I don't think they made it any more specific to him. They said they took into account his delay but I'm not sure how much. They looked up what typical 12-15 month olds do but he isn't typical anything, clearly. They wanted him to put a candle in a cake, how is he supposed to know to do that when he hasn't even seen it done and just their showing him an example isn't enough. I just think they were digging, looking for it and some things can be interpreted many ways, not just Autistic kids throw toys but that's how they made it sound. When he doesn't want to play with something he throws it, so what? I'm pretty sure if they make this decision to diagnose him then we will be appealing it. It's not just how I feel but based on what I saw while we there and what I know of my son and their attitudes really didn't sit well with me. They were treating us like we didn't know anything, like we hadn't been doing the more sign with him forever.

betsy0040's picture
Joined: 03/28/08
Posts: 121

Another thing is that none of his therapists think he is either, so it's not just my opinion but theirs as well. In fact some were rather suprised we were even going through with the evaluation. I have a friend with two boys who are Autistic and she's coming over next week to see Joshua and give me her opinion.

betsy0040's picture
Joined: 03/28/08
Posts: 121

On a scale of 0-10 with a 6 being "on the spectrum" he scored a 6. She didn't give any other information, we will get a report in 4-6 weeks. It does not mean he has Autism, just that he is on the spectrum.

mujul79's picture
Joined: 01/22/05
Posts: 1843

I have been reading here and on FB.

I am not sure if it will help you to know I am right here with you and Heath is the same age. For us it almost went the other way. They kept telling me he was devementlay delayed in motor and speech and did not play with children and showed signs of being on the spectrum. Well I pushed and pushed for all the EI I could get. I took him to a nero, I also made sure he had not just a regular pedi for when he is sick and to make referals for insurance but also a devemental pedi. One that sees children all the time who only has delays.

So often they kept telling me "Heath is hearing impaired that is why his balance is off" or "he is delayed and has low tone some kids just are" NO I needed a why is he low tone your are not just born that way. Did he have CP? Did it happen with the sezuires as an infant after his DtaP shot? I wanted answers and I was told over and over the EEG is normal, CT is normal. As the mom and already having older sibblings it was more then he is hearing impaired causing his issues I mean what dose his hearing have to do with his tone? When I asked that they kept saying "his balance is off so he is not doing PT stuff like other kids so it is talking longer to build his tone" I was not buying it.

I started to google all his symptoms. And found a sight that had them all in one place!!! Then I read how rare it was and eveyone thought I was nuts. But the Pedi is so supportive that she said fine I can't just say "he needs and MRI to check for Chiari because mom thinks so!!!" Anyway she noticed his neck, he favors to hold it to one side so she set up and x-ray of his neck. The x-ray did show that his C1 and C2 where off and based that we did a c-spine MRI. In our case I had to switch pedi's to find one that would to the testing I was asking for and not kist play it off as "some kids are more delayed then others" act I was getting in GA.

The tech asked me why we where doing it when I walked in and I point blank said "I think he has Chiari based on sysmptoms, so even though his chart says he is here because of a "twisted neck" will you look for Chiari?" He was kind of taken back and said most poeple don't even know what that was when diagnosed let alone no parent ever asked for it to be looked for on a scan. But he said he would and then we talked about symptoms and he agreed Heath had them. 3 days passed and Nero called and Heath had Chiari. Since then they have not said one word about being on the spectrum they blame everything on the malformation. That is almost just as frustrating because now I feel like they blame that for everything or the hearing loss and it is not a big deal to anyone but me that he is 10 months behind his peers. I know in your case ti is genetic so you can't "fix" it but in Heath's they do have a surgery for it and still no one is sure if he should have it or not.

AS far as the spectrum goes I was told if he is doing puzzles, and starting to copy what others are doing (he could do the candle cake thing after being showed) and makes eye contact when you talk to him that it is ok with his delays that he is not playng with peers and only just starting to do anything wiht out direction frist. They don't think based on that that he is on the spectrum.

But I question that even though hearing that he is not is a good sign. Heath will sit for hours on hours with blocks if that is what I give him to do and not need me or anyone eles to stay happy. He won't move onto new tasks until you tell him "go read books or do some puzzles" he is content to just be left alone and look out the window if that is what we tell him to go do. He only just started even telling me when he was hungery this past month before that he even as an infant would just wait until I offred food and then eat like he was starving. He also has a sensory disorders and seems to feel pain diff then the rest of us. He also shows signs of being OCD with how things have to be in order or he will fix them to be. If you show him 1 time an order of colored blocks and then try to mix it up he puts them back the way you had them the first time. His drink had to be in the same place on the tray when he is not drinking it, and all doors have to be closed or he will not do anything until he get up and closes them. So he is showing some strange things for a 2 year old to care about or be bothered by, and I don't think we can just say it is only the Chiari or hearing impairment.

betsy0040's picture
Joined: 03/28/08
Posts: 121

Joshua is in the wait list for developmental Peds here, very long waiting list. We saw one out of town (3 hours away) last summer who we didn't like so we didn't go back. I'm trying to decide if it's a blessing in disguise or not.

mujul79's picture
Joined: 01/22/05
Posts: 1843

AS to you question can they tell if it is or not at 1? I agree with the girls above if you know sooner you get services sooner and they get the help they need. But in your case he is already getting services so a diganoses is not as needed right now. In some states I hear that they won't even lable a chid as on the spectrum until they are in 2nd grade incase it is just delays they want them to have time to chatch up. I was told the same about Peter and ADHD that until he is in 2nd they won't even test him for it because at this point he is more of a distraction to class mates then himself and his gades are all A's and B's.

LOL ok I don't know how any of what I typed is going to help you but I just don't want you to feel alone. BTW we go to genetic's in the am, and I don't even know what to say to them about why we are there. And advice for talking to a genetic dr for the first time?

mujul79's picture
Joined: 01/22/05
Posts: 1843

"betsy0040" wrote:

Joshua is in the wait list for developmental Peds here, very long waiting list. We saw one out of town (3 hours away) last summer who we didn't like so we didn't go back. I'm trying to decide if it's a blessing in disguise or not.

Heath has only seen ours once and it was right before we found out he had Chiari. I am trying to get him back in since then.

betsy0040's picture
Joined: 03/28/08
Posts: 121

There is no time in our schedule for anything additional right now and they even said there wasn't anything we could do until he's 3 when he'll be eligible for school services. I agrewith that, what's the point of giving him another label now when he's already getting so much in terms of therapy and has already been in preschool for a year anyway. I think part of what's bothering me is we are already doing so much, going through so much, he already has diagnoses, do we really need more? I'm not sure most people can understand that, I'm sure you all can since you already dealing with a lot, adding anything to it is hard.

We didn't really say much to genetics, I had a phone interview with them before we went but while we were there the first time they just examined Joshua and took blood. Then we waitied for the results. You can just tell them you want to rule it out.