ASD and speech delay

[MilosMommy7]

my son is 20 months, today at 9am he has an evaluation with Early Intervention for speech delay and autism screening. he doesnt have a single word in his vocabulary, so i'm eager to start his speech therapy.
as a mother, i have intuition (as we all do lol) and i just feel strongly about my hunch that he has autism (or aspergers). they came to do a mini-assesment to see if he qaulified for Early Intervention services. in order to qualify they need a score of 50 and Milo scored 125. the lady said most of his scores came from the autism screening questions. and his problem areas seem to be social and communication.

if anyone else is going through this or has recently gone through this, i'd love to chat :wave:
i'll come back and update once i get proper answers

 

[Midnight_Fairy]

Hugs hun. My son didnt start the diagnosis process untill he was 3 and he got diagnosed at 5. He is nearly 7 now. I will be happy to help with any questions about the tests etc though x

 

[WearMyKissx]

Hi there

We are currently going through all the assessments with my son, who is 2 and a half. He didn't start talking until he was 2 but its still not proper words, hes mainly copying from Thomas the Tank Engine. We were reffered in April for SALT & autism assessments and so far been to a SALT drop in - who will see us in October, simply because they're understaffed so theres a waiting list, and we have seen someone for his autism assessment. She wants to see him one more time but she is certain he is on the autistic spectrum.

 

[MilosMommy7]

his mini-assestment to see if he qualified was about 2 weeks ago (13 days). we wouldve gotten in a couple weeks later but someone cancelled this appt time and we slipped in
the thing about him being 20 months is that i'm nervous they wont feel comfortable diagnosing hiim until he's 2. it's only 4 months away so that's not too bad. but i'm glad i'm starting it earlier than most people do. i wouldve gone crazy waiting until he was 2
leaving in 5 minutes for the eval

 

[MilosMommy7]

oh and Midnight, why did it take 2 years to diagnose?

 

[WearMyKissx]

his mini-assestment to see if he qualified was about 2 weeks ago (13 days). we wouldve gotten in a couple weeks later but someone cancelled this appt time and we slipped in
the thing about him being 20 months is that i'm nervous they wont feel comfortable diagnosing hiim until he's 2. it's only 4 months away so that's not too bad. but i'm glad i'm starting it earlier than most people do. i wouldve gone crazy waiting until he was 2
leaving in 5 minutes for the eval

Good luck! When we took Ryan for his assessment, and they said they feel he has ASD, my other half asked how were they sure as 2 is too young, she replied no and she has been diagnosing children from aged 18 months so 20 months might not be too early to diagnose Milo, but I do agree with the earlier the better.

 

[Midnight_Fairy]

oh and Midnight, why did it take 2 years to diagnose?

Just waiting lists. I am surprised to see so many people get diagnosis so soon!

Ours went like this

age 2yrs 9mths
Me knowing he was on spectrum and taking him to HV

HV sends us for speech and lang assessment

speech refers us to peadiactrican

portage intervene and arrange 1-1 help at preschool

see pead and arrange to see us again in 6mths

he carry's on with his speech therapy

speech therapy ends and he is discharged

He is refured to hospital to rule out Fragile X syndrome by blood test

Blood tests take about 6 weeks and were clear

Back to pead numerous times while she kept an eye on him and how he developed (we went to see her about 8 times)

M is refured for official autism assessment and has 18mth waiting list!)

while waiting for official assessment he is still being seen by pead and occupational therapist regularly.

Finally get assessment #1 which is speech and lang 1 hour long

week later next assessment which is also hour long

Then I have to chat for 3 hours (!) about all his history etc

final assessment and results a month later which was official diagnosis.

Just want to add- Diagnosis does not automatically mean statement of educational needs. I still had a 2 yr battle ahead of me AFTER the diagnosis just to get him what he needs at school. Diagnosis means F all really unfortunately

 

[MilosMommy7]

back from the EI eval. he of course qualifies for speech therapy. but saw no concern for ASD. i'm not sure whether or not i should be happy about it (or should i say accepting of it). milo acted NOTHING like he typically would. and videos arent "enough to go by." i've been chatting with other mom's of children with ASD and they saw the videos i have and felt comfortable with my concern for ASD.

they marked him delayed in receptive & expressive communication, personal-social and cognitive.

they're gonna call to set things up.

 

[Midnight_Fairy]

what are the videos? x

 

[MilosMommy7]

i recorded his ASD redflags. like his flapping, spinning, stacking, gathering, zoningout, not responding to his name (many videos if him not responding to me).

i figured i'd wait until his 2nd birthday and see if i think he's progressed or some of the ASD traits have faded or anything. personally i felt like the videos i had wouldve been enough "evidence" for them to atleast look into it.
they wrote that he "looks when names called", yet when the one lady was calling his name he ignored her for the longest time. he was so excited with all the toys he was looking all over and at everyone because they were new faces.


the biggest thing for me is when i heard they didnt see a concern for ASD, it made me feel like my motherly instict is wrong and i have no idea what i'm talking about. maybe i'm just hormonal cause i started AF yesterday. but i wanted to cry the entire way home because i felt like an idiot. even the service worker who did his mini-eval at home (she was there today) said he didnt act anything like this when she was at our house. and after her mini-eval she said his scores were high because of the questions that screen for ASD. so i dont get how they saw it at our house but not at the place earlier.
hopefully they'll change their minds in the future after getting to know him.
they said the speech therapist will come out every 3 months to check on his progress. and some other lady (cant remember her title) will come out to help with his cognitive. but i dont remember if they said how often she'll be coming out. i think once a week.

 

[Midnight_Fairy]

i recorded his ASD redflags. like his flapping, spinning, stacking, gathering, zoningout, not responding to his name (many videos if him not responding to me).

i figured i'd wait until his 2nd birthday and see if i think he's progressed or some of the ASD traits have faded or anything. personally i felt like the videos i had wouldve been enough "evidence" for them to atleast look into it.
they wrote that he "looks when names called", yet when the one lady was calling his name he ignored her for the longest time. he was so excited with all the toys he was looking all over and at everyone because they were new faces.


the biggest thing for me is when i heard they didnt see a concern for ASD, it made me feel like my motherly instict is wrong and i have no idea what i'm talking about. maybe i'm just hormonal cause i started AF yesterday. but i wanted to cry the entire way home because i felt like an idiot. even the service worker who did his mini-eval at home (she was there today) said he didnt act anything like this when she was at our house. and after her mini-eval she said his scores were high because of the questions that screen for ASD. so i dont get how they saw it at our house but not at the place earlier.
hopefully they'll change their minds in the future after getting to know him.
they said the speech therapist will come out every 3 months to check on his progress. and some other lady (cant remember her title) will come out to help with his cognitive. but i dont remember if they said how often she'll be coming out. i think once a week.

They never took any notice of my videos either. Probably why they drag assessments out. I guess they have to be sure as many conditions are similar and Autism is a life long label to have! It does drag on, but you will get there. Good luck x

 

[MilosMommy7]

i'm excited to start his therapy. the only suggestions they gave for his speech to try and teach him signs for things like more, eat, drink, etc.

 

[WearMyKissx]

It could be because he is quite young they're not even thinking he could have ASD. They told us to do the same with Ryan in regards to speech, so we do our own signs for things and it has worked for us.

 

[sun]

i'm excited to start his therapy. the only suggestions they gave for his speech to try and teach him signs for things like more, eat, drink, etc.

Signing has been a godsend for us and LO. He is starting to vocalize a bit with sounds now (he's 20 months), but the signs he knows have really helped his frustration. He has been in speech therapy for almost a month and though I don't know if it has helped his speech yet, it has really helped me learn how to help him.
For me that has been the biggest change - that I'm learning how to help! He doesn't have any firm diagnosis for anything, but he does have a global delay. x

 

[MilosMommy7]

the coordinator from early intervention called me today. day of all days i forgot my phone at home! but i'm gonna call first thing in the morning to set up our first meeting to get together our IFP (individualized family plan).
so far the only sign he'll try doing is the sign for "more". but he'll only do it if we show him. he doent do it to let us know he wants anything.

 

[JASMAK]

When Makena was first assessed around the same age, her language skills came back as a 9 month old baby!! Keep working on the signing and try to find some books. There is one called "more than words" and it is great. ASD or not, it is good for any child with communication difficulties....even those who don't!!! It too us a year (about) to get Makena diagnosed...but, start NOW as the earlier the better, and you don't need a 'diagnosis' to get the help your child needs.