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Autism or Developmental delay?

Posted by on Nov. 4, 2014 at 4:02 AM
  • 17 Replies

   First I'd like to say hello I'm Darci and new here to cafemom looking for extra support from others going through or that have already gone through situations like myself. I'm just going to jump right in but please be kind and bare with me this is my first time trying to write this out. 

            My son Sylus is 19 months old he was hitting milestones the way he should up untill around 12 months...he finally decided to walk around 14-15 months he had good balance fans walked properly. He was saying mama, dada baba and thank you. Around 16 months he learned to run but began running and walking on his tip toes and it became more often that now hes always on his toes.  Around that time he stopped saying anything but mama maybe once or twice a month. His little cute "awkwardness" like watching the fan, spinning in circles for 15 minutes at a time, flapping his hands, building everything into tall towers and lining cars across the entire living room became more repetitive and are now his normal everyday activities. He rather be alone than share play with anybody else as if he's in his own world for hours, he gets frustrated to the point of crying if his blocks knock over while he's building them up high or his cars aren't touching while lining them across the floor and if I try to help him he seems to get even more upset. If he holds a book up or I hold something up to him he sticks his face out far and gets close to the object until he's touching it with his face. He cannot use utensils only his hands for feeding himself and refuses help, he is very picky about what he eats certain textures he'll have nothing to do with or he'll grab it off his plate throw it on the floor or squeez it in his hands grunt like he's angry and throw it. He thinks very hard and examines everything I try to give him to eat before he decides what he'll do with it. The only time he will let me snuggle close to him is if he gets hurt and as clumsy as he is now him getting hurt isn't often at all , he'll knock his head off a corner and keep going as if he didn't. He hates his finer tips toes and ears being touched and refuses to hold my hand. He gets agitated while getting diaper changed and will dig at his thighs. He doesn't let me know in any way when he's got a soiled diaper or if he's hungry so I have to be checking constantly. He can clap but doesn't wave point color or play imaginatory play like putting a phone to his ear. He never notices his name being called but loves music so I know his hearing is fine but to get his attention I have to be right in front of him. He does give open mouthed kisses but sometimes gets over excited and will bite my lips, he has no sense of danger at all but is very very smart!!! I've had a motherly instinct for quite sometime now that he may be autistic and I'm just waiting for his full evaluation assessment but in the mean time he has been evaluated through early intervention and starts therapy very soon. They said he is severely delayed but is a content happy boy with characteristics of a developmental delay. I'm so sorry for how long this is but I wanted to give as much information as possible to get opinions during this waiting process untill his full autism assessment. We've begun everything to help him progress which is the best thing I can do for him at this point but the waiting for a full "diagnosis"  is quite hard. 

by on Nov. 4, 2014 at 4:02 AM
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Momof4AEMW
by Platinum Member on Nov. 4, 2014 at 7:15 AM

Hugs mama.  There is good information at autismspeaks.org you could check out.  I would also have a developmental pediatrician evaluate him if you are concerned.  Having early intervention is a great start.  Good luck, and welcome to the group!  Great support here.

SylusTheGreat
by on Nov. 4, 2014 at 9:55 AM


Quoting Momof4AEMW:

Hugs mama.  There is good information at autismspeaks.org you could check out.  I would also have a developmental pediatrician evaluate him if you are concerned.  Having early intervention is a great start.  Good luck, and welcome to the group!  Great support here.

Thank you so much!! I will absolutly check the site out. We've got all of his early intervention evaluations and interviews done so Friday we will find out his in home therapy schedule. I'm working with the resource center to get his full autism assessment. We've done our interview with them and I'm just impatiently waiting for the call to set the appointment date. I joined here for some insight, support and opinions on whether or not my motherly instinct of sylus being autistic sounds correct so hopefully I can get a good amount of feedback and be a regular here.

Momof4AEMW
by Platinum Member on Nov. 4, 2014 at 10:10 AM

While none of us mamas can tell you for sure, our motherly instincts are usually right!  ;)  you list a lot of red flags here.  I would take these to your evaluation to discuss with the evaluator.  Your son is young, and some docs do not want to label so young.  But labels bring services.  I hope if your son has it, he gets the services he needs.  Good luck!

Quoting SylusTheGreat:


Quoting Momof4AEMW:

Hugs mama.  There is good information at autismspeaks.org you could check out.  I would also have a developmental pediatrician evaluate him if you are concerned.  Having early intervention is a great start.  Good luck, and welcome to the group!  Great support here.

Thank you so much!! I will absolutly check the site out. We've got all of his early intervention evaluations and interviews done so Friday we will find out his in home therapy schedule. I'm working with the resource center to get his full autism assessment. We've done our interview with them and I'm just impatiently waiting for the call to set the appointment date. I joined here for some insight, support and opinions on whether or not my motherly instinct of sylus being autistic sounds correct so hopefully I can get a good amount of feedback and be a regular here.


SamMom912
by Platinum Member on Nov. 4, 2014 at 11:15 AM

The sensory piece is a huge red flag for me in thinking you're right about him... 

And developmental delay... Well, the autism diagnosis of pervasive developmental delay is in fact an autism diagnosis.. So it may be someone's nice but indirect way to direct you in thinking that he is infact autistic?

I got that about my son when he was in early intervention- at 19 months... But Sam (now 8) has always been verbal... Since 9 months old... But plenty of EI and support service coordinators referred to his as "developmentally delayed in social and emotional areas.. Not cognitive... So, they were saying ASD, without saying ASD... 

emarin77
by Gold Member on Nov. 4, 2014 at 11:42 AM

I would have your child diagnosed by a movement disorder neurologist, since he is walking on the tip of his toes.  That is not normal and he might have Spastic Paraplegia or Cerebral Palsy as well as Autism.

SylusTheGreat
by on Nov. 4, 2014 at 1:34 PM

His papers more in depth do also say "Developmental Delay"  " severe delay in social-emotional development"  "severe delay in overall communication skills" "severe delay in cognitive abilities"  all the others are mild to moderate. "Sensory processing difficulties" and at the end  " overall Sylus exhibits a number of characteristics which maybe indicating the occurrence of a developmental disorder." 

    I've got a couple packets of papers with loads of information so I sort of skipped around and picked out main parts which maybe you would know more of having been through everything's already and me being new to it all it just seems like so much information it can be a tad confusing. 

Quoting SamMom912:

The sensory piece is a huge red flag for me in thinking you're right about him... 

And developmental delay... Well, the autism diagnosis of pervasive developmental delay is in fact an autism diagnosis.. So it may be someone's nice but indirect way to direct you in thinking that he is infact autistic?

I got that about my son when he was in early intervention- at 19 months... But Sam (now 8) has always been verbal... Since 9 months old... But plenty of EI and support service coordinators referred to his as "developmentally delayed in social and emotional areas.. Not cognitive... So, they were saying ASD, without saying ASD... 

JenniKT
by Member on Nov. 4, 2014 at 4:29 PM

I just want to say Hi and welcome Darci! You've joined a great group. 

Tristen's(who's 8 now) paperwork from his EI services said the same thing with a few differences. He was moderate to severe in all areas. When the "specialist" they brought in examined Tristen, he was misdiagnosed with mental retardation. I didn't agree with that since there were more signs that lead me to believe he was Autistic.  When he turned four, I had his pediatrician refer us to a neurologist. After numerous tests with both the neurologist and a psychiatrist, Tristen was finally diagnosed with Autism Spectrum Disorder-Pervasive Development Disorder-Not Otherwise Specified and ADHD.

I'm telling you that the paperwork gets more confusing the older the kids get. I'm like you, I skim through most of it lol  Also, if you feel that he's Autistic, fight for testing. You may have to wait till he's a little older, but it makes things a lot easier once that diagnosis is given.Though I also agree with SamMom, developmental delay seems to be a nice way of telling you your child's Autistic since Autism and developmental delay sometimes goes hand in hand. 

Good luck to you.

Quoting SylusTheGreat:

His papers more in depth do also say "Developmental Delay"  " severe delay in social-emotional development"  "severe delay in overall communication skills" "severe delay in cognitive abilities"  all the others are mild to moderate. "Sensory processing difficulties" and at the end  " overall Sylus exhibits a number of characteristics which maybe indicating the occurrence of a developmental disorder." 

    I've got a couple packets of papers with loads of information so I sort of skipped around and picked out main parts which maybe you would know more of having been through everything's already and me being new to it all it just seems like so much information it can be a tad confusing. 

Quoting SamMom912:

The sensory piece is a huge red flag for me in thinking you're right about him... 

And developmental delay... Well, the autism diagnosis of pervasive developmental delay is in fact an autism diagnosis.. So it may be someone's nice but indirect way to direct you in thinking that he is infact autistic?

I got that about my son when he was in early intervention- at 19 months... But Sam (now 8) has always been verbal... Since 9 months old... But plenty of EI and support service coordinators referred to his as "developmentally delayed in social and emotional areas.. Not cognitive... So, they were saying ASD, without saying ASD... 


SylusTheGreat
by on Nov. 4, 2014 at 5:08 PM

Thank you ladies so much for your personal stories and making me feel comfortable here !! 

 The resource case worker did have to make a special call to be sure he is age appropriate for the full assessment so I'm hoping once that appointment is made we can figure everything out but it seems to me a lot of my findings reading around on here has shown more and more testing for the right diagnosis so with that and you ladies in mind I will absolutly keep pushing forward until I feel sylus is diagnosed correctly.  So far I've had to take things into my own hands and call around to make all the appointments we've had and begin his early intervention because his ped kept pushing off each time I would bring it up.  It is quite frustrating not having an exact diagnosis because I feel then I can get him exactly what he needs but for now his early intervention will benefit him best I think.

Quoting JenniKT:

I just want to say Hi and welcome Darci! You've joined a great group. 

Tristen's(who's 8 now) paperwork from his EI services said the same thing with a few differences. He was moderate to severe in all areas. When the "specialist" they brought in examined Tristen, he was misdiagnosed with mental retardation. I didn't agree with that since there were more signs that lead me to believe he was Autistic.  When he turned four, I had his pediatrician refer us to a neurologist. After numerous tests with both the neurologist and a psychiatrist, Tristen was finally diagnosed with Autism Spectrum Disorder-Pervasive Development Disorder-Not Otherwise Specified and ADHD.

I'm telling you that the paperwork gets more confusing the older the kids get. I'm like you, I skim through most of it lol  Also, if you feel that he's Autistic, fight for testing. You may have to wait till he's a little older, but it makes things a lot easier once that diagnosis is given.Though I also agree with SamMom, developmental delay seems to be a nice way of telling you your child's Autistic since Autism and developmental delay sometimes goes hand in hand. 

Good luck to you.

Quoting SylusTheGreat:

His papers more in depth do also say "Developmental Delay"  " severe delay in social-emotional development"  "severe delay in overall communication skills" "severe delay in cognitive abilities"  all the others are mild to moderate. "Sensory processing difficulties" and at the end  " overall Sylus exhibits a number of characteristics which maybe indicating the occurrence of a developmental disorder." 

    I've got a couple packets of papers with loads of information so I sort of skipped around and picked out main parts which maybe you would know more of having been through everything's already and me being new to it all it just seems like so much information it can be a tad confusing. 

Quoting SamMom912:

The sensory piece is a huge red flag for me in thinking you're right about him... 

And developmental delay... Well, the autism diagnosis of pervasive developmental delay is in fact an autism diagnosis.. So it may be someone's nice but indirect way to direct you in thinking that he is infact autistic?

I got that about my son when he was in early intervention- at 19 months... But Sam (now 8) has always been verbal... Since 9 months old... But plenty of EI and support service coordinators referred to his as "developmentally delayed in social and emotional areas.. Not cognitive... So, they were saying ASD, without saying ASD... 



magmommy
by Silver Member on Nov. 4, 2014 at 8:26 PM
It is so hard getting help for our kiddos. We know them so well. And instincts are given to us for a reason.

This is a wonderful group of mamas. They have been encouraging me and teaching me as I go through many testings and school placements.

Welcome. Lots of love.
SylusTheGreat
by on Nov. 4, 2014 at 11:56 PM

It really can be and that's what frustrated me about his pediatrician. I am with my child 24/7 and his pediatricians see him for maybe 15 minutes every so often so for me to tell them my concernes more than once you'd think they would have wanted to help me in every way possible instead of putting it off longer each time I told them. So far I have been getting the support and feedback I was hoping for by joining this site and absolutly feel its a positive beginning for me here. :) thank you.

Quoting magmommy: It is so hard getting help for our kiddos. We know them so well. And instincts are given to us for a reason. This is a wonderful group of mamas. They have been encouraging me and teaching me as I go through many testings and school placements. Welcome. Lots of love.


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