Not even really sure what this is, maybe a vent?

Sorry, very long. Background: my son initially began services at 15 months because of feeding issues and significant speech delays. Within a few weeks his speech provider had him eating a variety of solids without gagging and over the last few months we have noticed a progression in receptive language. Not a ton of progress, but progress just the same. His oral language consists of babbling and occasional word or imitation of words. Now I'm an educator, I know the signs of autism and have always had my fears. Everyone who has come into contact with him said no way. These are not doctors, I know, but service providers with many, many years experience, friends who are special educators, etc. Our speech provider noticed he was shaking (we kind of knew he was stimming when he was excited) but it had increased so we made a Neuro appointment to rule our seizures. As we were waiting over the last few weeks, it's dropped off to virtually happening once in a blue moon. We had our appointment yesterday. After waiting almost 40 minutes DS had a melt down because he was hungry, tired, hot and wanting to get the hell out of there. The doctor came in, barely introduced herself, asked us a few questions, looked at our county paperwork, medical history, family history, what he can and can't do. DS wanted nothing to do with her or her toys because at this point he was melting into my lap. She made ZERO effort to soothe or interact with him. She looked at us and said, sorry your son has autism and the county needs to give him ABA and he needs a genetic blood test to rule out fragile x, and a sedated MRI and EEG. My mouth hit the floor. She said it as if it was nothing. DH asked her where she felt he fell on the spectrum and she had no idea because he's so young. Then she handed us a CARS test and told us to fill it out at home (we both did separately and came back not on the soecttum). DS is generally well behaved, shy and easily overwhelmed in a crowd or new environment but adapts and interacts once he feels comfortable.. I know some of the symptoms he exhibits could be on the spectrum but also are on the list for simply being developmentally delayed. He's behind by a little over 6 months. My speech provider with 30 plus years of experience was in total shock, my caseworker was in shock, my friends and special educator friends who know him well were shocked and livid at the way we were treated. We went home and immediately made a second opinion elsewhere. I guess it was always a fear for me. I know all the signs, I work with autistic children. I feel like I dropped the ball. I have had literally everyone in my life, including professionals tell me he is is self driven, stubborn, savvy, cuddly, makes amazing eye contact and always looking to engage. He is fine, just delayed. He loves trucks, cars, running around the house chasing our dog. He rolls on the floor with us and wants to be tickled. He now really likes his mommy and me class and after initially crying for the 45 minutes the first 2 sessions now runs and plays. He was at home with my 70 year old aunt the first 18 months of his life and will be starting a structured daycare where we had hoped he'd start to pick things up speech wise and have other kids to play with. Praying things would come to him. I'm sick to my stomach. I know my boy today is the same adorable, happy, snugly boy he's always been. I know that ABA will be just another thing he will get to help him. I know that getting him help early, regardless of diagnosis was the best thing for him. I cannot help but think though, did I miss something? What did this woman see in the 10-15 minutes she was with us that all these other people in his life who have spent hours and days with him did not. I guess only time will tell. We will wait until October for our next appointment with someone new. Were we just slapped with a label or were people just telling me what I want to hear? I've been up all night knowing there is nothing I can do about it either way other than add the services and hope for the best. If you got this far, thank you for reading. Any insight would be appreciated.

Not even really sure what this is, maybe a vent?

Hugs to you.

I know how hard it is when struggling. My son was diagnosed at just about 2. Then and now, I hear all the time, "he doesn't seem autistic" That just infuriates me. I went for a second opinion when my son was about 3 1/2 and received the same diagnosis.

It's not easy but try not to focus on the label. Just keep doing what you are doing. And take all the help you can get for your little boy. It will do nothing but help him in the long run. I don't focus on if my son is or is not autistic. I just take every last bit of help I can get him. He is almost 6 years old now and still struggles with fine motor delays and speech delays, not to mention behavioral problems. There is nothing that we as parents did or did not do to our children. It's just the way they are. Remember he is a little boy first and an autism diagnosis 2nd.

My suggestion would be to get involved with an autism support group. SASI in suffolk county has some great programs for all ages and for parents. They have a facebook group as well. We all support each other and vent on a regular basis.

If you want to chat, PM me.

Re: Not even really sure what this is, maybe a vent?

You should have the Speech Therapist request an ABA Eval through the agency. Early speech delay can exhibit the same characteristics of Autism.

Re: Not even really sure what this is, maybe a vent?

Thank you for your responses. I think my biggest problem is that this woman didn't actually evaluate my son. She didn't interact with him, talked over us and rushed us out. I'm still really not sure what is really going on. I just want a proper diagnosis so I get him the right services with the right focus. His case worker is on vacation so I'm going to wait until Monday as to how we should proceed. I definitely want a psychological done at my house.

Re: Not even really sure what this is, maybe a vent?

Re: Not even really sure what this is, maybe a vent?

First of all I know how tough all of this can be; appointments, evals, therapies.
I feel like I could have written this post myself about my ds. My ds was in EI for speech at 2 yrs old and had multiple evals and no one, I mean NO ONE believed he was on the spectrum. He was friendly, social, made tons of progress in speech, played with other kids, just seemed behind with language. There were some early signs for me, but those behaviors came and went, never really stuck around. It wasn't until he got to school that more of the behaviors emerged. While I had suspected asd for early on I had so many professionals and family members tell me that was not it. Eventually we did see a neuro and were given the same CARS forms to fill out and our experience was very similar to your own. The Dr. spent maybe 15 minutes looking at some paperwork we brought with us and gave us the same Dx.

I had a few doctors and early on multiple school based professionals give us a very poor outlook on my son's future and what he would be capable of. Stay positive and forget the label. My son has overcome so much in the last few years. I am certain that if I took him back to those teachers and doctors who told us "he probably would never be able to (fill in the blank)" they would absolutely be shocked.

Re: Not even really sure what this is, maybe a vent?

Also I forgot to add that there really is no one person or one test/eval done that will give a true Dx. In my experience the neuro took all the info from school and providers to help get a better picture of him. The neuro did not interact much with my son either, in order to get a true picture they would need to interact with them in a variety of settings which is just not possible. My son at home is very typical but in a classroom has trouble remaining focused and had some repetitive behaviors that we had never seen at home. I think this is why is took longer fro my son to be diagnosed. Every eval we had through EI was done in home and there was nothing stand out happening at home.

Not even really sure what this is, maybe a vent?

I think your son is very young to get a diagnosis like that especially when already exhibiting a speech delay. I think the suggestion of getting him tested for the genetics testing was good as age does not matter for that and you will either know if he has it or if he doesn't. What I would do is not focus on what she diagnosed because he is so young but take that diagnosis and get every single therapy you can get. The world opens up once they see autism on the file. When he is older (in the next year or so) get him tested again by a good pediatric neuro and see what they say. Testing needs to be over a few day or visits and is definitely not just 15 minutes. My daughter was diagnosed at 3ish and had no "symptoms" of autism. She had great eye contact, never stimmed, loved to hug us and was very social. But she is definitely autistic. All kids present differently and there is no set checklist to determine that That is why it is a spectrum disorder. When DD was in 2nd grade her autism consultant was INSISTING she was not autistic. Fought with me at CSE and wanted to declassify her. I made the district retest her at their expense and there was no doubt that she is. She is just different than most.

Re: Not even really sure what this is, maybe a vent?

Thank you everyone for your insight and sharing your stories. I greatly appreciate It and respect all of you and your children for what you have and continue to endure. I just have a gut feeling there is more to the story for him and he is so young, I spoke to his team and they support opening the case whenever I'm ready and will do whatever they can to get as much as they can for him. I really lucked out with a fabulous agency and point person. I'm getting a second opinion of course, but I wanted to see if anyone had recommendations for a Neuro, psychologist, ENT willing to see babies and a developmental pediatrician, preferably who take GHI. I am not ready to put him under for an MRI and EEG yet. I'm just not comfortable. I'll do the blood but after the amount of genetic testing we had just to have a baby, I highly doubt anything will be found. I have to say, I still hate that Neuro. Whether she is right or not, you don't tell someone that their kid is on the spectrum like they were ordering a burger at a fast food joint. Like it was no big deal. Have a bit of bedside manner and compassion. She didn't even ask if I had any questions, handed me a tissue and walked out saying see you in 6 months. I think I'm more upset about the treatment of the situation rather than the diagnosis the more I think about it.

Message edited 7/21/2017 10:47:53 PM.

Re: Not even really sure what this is, maybe a vent?

I'm not sure how old your DS is, but if over 12 months, I would request the ADOS 2 be administered. I'm sorry for the way that neurologist treated you, she sounds really insensitive. I hope you get answers soon.

Re: Not even really sure what this is, maybe a vent?

I'm sorry. I know you feel. My son was diagnosed a little after 2 years old by an EI psychologist. He came to our house and spent 15 min with him and said I'm sorry, your son has autism. I felt like I got slapped in the face. We were stunned. DH didn't believe it for a long time. He kept saying this is ridiculous, he's so young, no one knows him like we do. DH eventually came around and is now my son's biggest advocate.

I think when they are so young it's much more tough to diagnose especially since it's such a wide range. As he has gotten older (he is 4 now), there is no doubt he has ASD now. My best friend who is a special ed teacher told me back then what will the diagnosis hurt? It will only get him services and if he winds up not needing all of them, you can scale back.

I will say the good thing about the label, is so far I have never had to fight for services for him in EI and CPSE. I have twins who got services though CPSE when they were younger (not on the spectrum, they were just delayed), and I felt like I was always battling for them. It can be very overwhelming. Just remember like you said, he is the same child he always was. The diagnosis doesn't change that. Hang in there!

Re: Not even really sure what this is, maybe a vent?

I'm sorry you had such a terrible experience :( Maybe try to see a developmental pediatrician instead of another neuro. Ours spent two hour long sessions with us before diagnosing my son. We did the CARs together and by the end we were both pretty confident with the diagnosis. It takes a long time to get an initial appointment but I felt it was worth it.

Re: Not even really sure what this is, maybe a vent?

Re: Not even really sure what this is, maybe a vent?

Not even really sure what this is, maybe a vent?

We see a neuro from Cohen's and really like her - Dr. Laureta. I found her after I had a horrible experience with another neuro as well.