I am officially an autism mom. Hello everybody

newbee36 · July 2014

Two days ago DS was diagnosed with Autism. He turned 3 on July 13, and got the diagnosis on July 16. This is our second evaluation. The first time he was evaluated at 15 months, and back than they told us "this guy can not possibly have autism". The mommy gut never left me. DS was hitting milestones on time, he is smart, no language delays, but is socially so awkward and whenever I saw him around kids and people, I knew something was off. So I pushed for another eval. We got on the waiting list and timed the eval to be as soon as DS turns 3 (that's the youngest age they evaluate at the neurodevelopmental clinic we went). It wasn't a good news (though expected), but I was so much more satisfied with the whole evaluation process this time around.
Based on the DSM-5 diagnostic criteria he is diagnosed with
Autism, Level 1 (on the higher end of the spectrum):
Requires support for social communication, and support for restricted, repetitive play;
Without accompanying intellectual impairment - average or above average cognitively;
Without accompanying language impairment - average expressive and receptive language skills.
That is the letter they gave us, and there will be 4-6 weeks until we get the full report.
I knew it, I expected it, and it was still hard to hear and it is hard to process. I cry at moments, relieved and happy at moments. Now it is time to make 10000 phone calls and to put some support plan in place.
Right now DS is in a day care and is doing well there. He is potty trained, great with self help, even has a sense of humor, he is very curious and so much into how things work. So far, for someone on the spectrum he has been very flexible - no rigidity to change in schedule, can sleep anywhere, always is eager to see something new and to go somewhere new. Good eater, good sleeper.
Jeez, I don't know how to be short, thanks for reading this far.

Unknown · July 2014

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newbee36 · July 2014

McRib said:

Welcome! he's a cutie. My son has ASD and is 4.

Thanks! These photos of DS are very old actually, I will update them.
Good to meet you! When was your son diagnosed? Which state are you in?

Junebug060609 · July 2014

Welcome.

Fellow newly-ish dx'd autism mom here. My son is 2 (will be 3 in September) and was dx'd in January. He actually sounds a lot like your son...except mine is non-verbal and has some receptive language delays.

I knew the dx was coming, but it still was hard. It opened a lot of doors for him to get therapy that is already helping though, so it was a crucial step.

newbee36 · July 2014

wife07mom09 said:

welcome! I am too and am pretty new, we were dx in May. we start ABA in a few weeks.

Thank you! I see you have two kids. Which one is on the spectrum, the younger or the older. Hope ABA goes well for you. We contacted several places that were suggested to us by the eval team. Those are state funded programs and we will start from there. If we opt for ABA, we will have to either move somewhere else or commute to an appointment... It sucks to be stuck in this little town.

newbee36 · July 2014

Junebug060609 said:

Welcome. Fellow newly-ish dx'd autism mom here. My son is 2 (will be 3 in September) and was dx'd in January. He actually sounds a lot like your son...except mine is non-verbal and has some receptive language delays. I knew the dx was coming, but it still was hard. It opened a lot of doors for him to get therapy that is already helping though, so it was a crucial step.

Hi there! Glad to hear strides are made.

I see you have a baby, how is your boy doing with his sibling?

Junebug060609 · July 2014

newbee36 said:

Junebug060609 said:

Welcome.

Fellow newly-ish dx'd autism mom here. My son is 2 (will be 3 in September) and was dx'd in January. He actually sounds a lot like your son...except mine is non-verbal and has some receptive language delays.

I knew the dx was coming, but it still was hard. It opened a lot of doors for him to get therapy that is already helping though, so it was a crucial step.

Hi there! Glad to hear strides are made.

I see you have a baby, how is your boy doing with his sibling?

He's actually done pretty well with her. There's sometimes some acting out for attention, typical for the age, but overall he does well. He will randomly walk up to her, pat her head tenderly, and give a kiss. He also seems kinda proud of her when the other kids in his daycare fawn over her (will come over and set his hand on her car seat with a smug little "that's mine" smile).

bliss611 · July 2014

Welcome to the board. My son is 4 and is on the spectrum. Recently diagnosed as well (Feb).

This board is a HUGE asset for anyone with a SN child.

greyt00 · July 2014

Welcome. It sounds like your boy has a lot of great characteristics.

DS1 is almost 3.5 and was diagnosed at 2.5. He is verbal but is behaving like a terrible-two right now. DS2 is being watched carefully.... so far he is doing very well.

newbee36 · July 2014

wife07mom09 said:

newbee36 said:

wife07mom09 said:

welcome! I am too and am pretty new, we were dx in May. we start ABA in a few weeks.

Thank you! I see you have two kids. Which one is on the spectrum, the younger or the older. Hope ABA goes well for you. We contacted several places that were suggested to us by the eval team. Those are state funded programs and we will start from there. If we opt for ABA, we will have to either move somewhere else or commute to an appointment... It sucks to be stuck in this little town.

the younger. DS just turned 2 in May, was dx in April. We finally secured insurance to cover ABA in July and he starts in August. It is incredibly expensive. Even with insurance it will cost us between the expensive insurance and copays between 14-20k a year. We are working on a financial plan to accomplish this as we believe it is in his best interest despite his "mild" autism. I put that in quotes because as I understand that even though we were told his ASD is mild (he isn't cognitively delayed either but was nonverbal but no longer is Yay again), the new DSM guidelines don't give it a rating just ASD and that's it. Our goal is to teach DS to learn, teach him to play (he has learned some on his own yay) and potentially mainstream him for K. We are lucky the ABA place we chose (its private) is 5 min from DD's preschool and 15 min from our house.
Good luck, this is a lot but I am excited and scared at the same time.

Hope you find ABA very useful and it helps your little guy makes big strides.

If they recommend ABA to us, we will consider it and then will have to put some financial plan in place. We don't have that money. The psychologist said DS would benefit the most from being around peers and having an aid to encourage and teach appropriate interaction. We spoke already to the school district, and have meeting in the second half of August to discuss the possibilities. Referral was also sent for the Parent Home Training program, and this is where we are waiting now. Meanwhile we do playdates (Luckily, DS likes being around kids of all ages) and work on appropriate social interaction.

newbee36 · July 2014

-auntie- said:

wife07mom09 said:

We are working on a financial plan to accomplish this as we believe it is in his best interest despite his "mild" autism. I put that in quotes because as I understand that even though we were told his ASD is mild (he isn't cognitively delayed either but was nonverbal but no longer is Yay again), the new DSM guidelines don't give it a rating just ASD and that's it. Our goal is to teach DS to learn, teach him to play (he has learned some on his own yay) and potentially mainstream him for K. We are lucky the ABA place we chose (its private) is 5 min from DD's preschool and 15 min from our house.

Actually the new DSM-5 guidleines do come with a Clinician-Rated Severity Guideline. @newbee36's was using them in the short report she got. IMHO, not enough doctors are making use of them. They could be a whole lot more meaningful to parents that "mild" as a descriptor.

Thanks for the clarification, Auntie.

SantoriniSteph · July 2014

Welcome! My DS is 3 1/2 years old. Dx ASD at 23 months, and is still non-verbal. We have done ABA, speech therapy, OT, and had a MRI. I have found this board very helpful!

newbee36 · July 2014

DC2London said:

Welcome! Cute kiddo!

Thanks!

I was told the exact same thing about my DS at 15, 18, 24 and 36 months. "He definitely does not have Autism." Fast forward to 48 months and we have an ASD diagnosis.

Wow, you had evals every 3-6 months? Who evaluated him each time? And what made you go for another eval each time you were told no ASD?

newbee36 · July 2014

DC2London said:

Welcome! Cute kiddo!

I was told the exact same thing about my DS at 15, 18, 24 and 36 months. "He definitely does not have Autism." Fast forward to 48 months and we have an ASD diagnosis.

BTW, your son is so cute as well!

newbee36 · July 2014

SantoriniSteph said:

Welcome! My DS is 3 1/2 years old. Dx ASD at 23 months, and is still non-verbal. We have done ABA, speech therapy, OT, and had a MRI. I have found this board very helpful!

Thanks!

Does your son receive therapy through the school or private?

newbee36 · July 2014

DC2London said:

newbee36 said:

DC2London said:

Welcome! Cute kiddo!

I was told the exact same thing about my DS at 15, 18, 24 and 36 months. "He definitely does not have Autism." Fast forward to 48 months and we have an ASD diagnosis.

BTW, your son is so cute as well!

Thanks!
We were actually participating in a study at NIH. I used to teach children with autism and a colleague of mine asked us to participate as "healthy volunteers" bc he was typically developing at that time. So they administered ADOS at each visit and a few other tests, then compared the results over time to children with an ASD.

That now makes sense. Thanks for explaining, I was confused. Is your son still in the study? I think he is a pretty good example of how sometimes it is easy not to recognize Autism ..

SantoriniSteph · July 2014

newbee36 said:

SantoriniSteph said:

Welcome! My DS is 3 1/2 years old. Dx ASD at 23 months, and is still non-verbal. We have done ABA, speech therapy, OT, and had a MRI. I have found this board very helpful!

Thanks!
Does your son receive therapy through the school or private?

The year he was 2 we did private therapy. We started with the Regional Center (we are in California) and then a new bill passed and we had to move over to have insurance cover it. Since we had already started treatment, insurance picked up immediately. We did in home ABA, signed him up at a special ed school twice a week, and had a speech therapy session once a week at the school. Once he turned 3 we were eligible for public school, the Regional Center helped us transition over pretty easily. We completely lucked out getting his teacher, she is incredible! He is now in her moderate/severe disabilities class full time, he gets ABA, ST, and OT in the class.

newbee36 · July 2014

SantoriniSteph said:

newbee36 said:

SantoriniSteph said:

Welcome! My DS is 3 1/2 years old. Dx ASD at 23 months, and is still non-verbal. We have done ABA, speech therapy, OT, and had a MRI. I have found this board very helpful!

Thanks!
Does your son receive therapy through the school or private?

The year he was 2 we did private therapy. We started with the Regional Center (we are in California) and then a new bill passed and we had to move over to have insurance cover it. Since we had already started treatment, insurance picked up immediately. We did in home ABA, signed him up at a special ed school twice a week, and had a speech therapy session once a week at the school. Once he turned 3 we were eligible for public school, the Regional Center helped us transition over pretty easily. We completely lucked out getting his teacher, she is incredible! He is now in her moderate/severe disabilities class full time, he gets ABA, ST, and OT in the class.

Sounds like you have nice services there. I would like to move somewhere with more options for my son.

newbee36 · July 2014

DC2London said:

I apologize if you already said, I couldn't find it in your replies, but where are you located?

I am in New Mexico. Where are you located?

Well, your son sounds a lot like mine. Very subtle differences at this time... At the eval now they actually told us that if we went elsewhere for evaluation, they could have missed him again. At his daycare they are still in disbelieve of his diagnosis.
What were the small differences you were noticing with Jack when he was little?

newbee36 · July 2014

DC2London said:

newbee36 said:

DC2London said:

I apologize if you already said, I couldn't find it in your replies, but where are you located?

I am in New Mexico. Where are you located?

Well, your son sounds a lot like mine. Very subtle differences at this time... At the eval now they actually told us that if we went elsewhere for evaluation, they could have missed him again. At his daycare they are still in disbelieve of his diagnosis.
What were the small differences you were noticing with Jack when he was little?

I'm in Virginia, just outside of DC.

Jack was always high needs. He comfort nursed more than other kids, he cried more than other kids (and had this shrill cry that I am shocked didn't pierce my eardrums). His separation anxiety was definitely what I would call extreme. Something as simple as me being on the other side of a clear shower curtain was enough to set him completely in distress.

He also was always a "little old man." He was so mellow and adult-like compared to his peers. It seemed really cute and I thought I was so lucky to have this tiny adult child who didn't jump off of furniture or make fart jokes, when all of his friends were so....rambunctious.

Yeap, ,my 'little old man" as well

As an infant though DS was not very needy. He was just very serious (smiled, but not as much as you'd expect from a baby). That was my first clue. Oh, and he was alert almost from birth. I thought that was strange too...

Assembly_Reqd · July 2014

Welcome!

newbee36 · July 2014

Assembly_Reqd said:

Welcome!

Thank you!

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