What age was your child (or you) diagnosed with ASD?

[Major Tom]

That's so interesting! Who was diagnosed first?

My son was diagnosed first. It took about a year for my diagnosis.

 

[aitai]

At age 2 years for our oldest higher functioning, he was formally diagnosed.

At age 3.5 years for our non-verbal moderate functioning, he was formerly diagnosed.

In both cases we as parents suspected at 18 months such a condition, or similar, as both had significant speech delays, some motor delays and difficulties, and many sensory issues, including also food related. As well, as I was good at picking up on details and traits in our children, as I was involved daily in their lives and like analyzing and understanding things, it made me want to get a diagnosis or formal explanation for the reason for the behaviors or difficulties.

You were an early advocate for your children! That is amazing!
Did you have experience with autism prior to your children? How did you know the signs to lead you to the idea before anyone else?

 

[aitai]

i’m curious what brought you to ask this question?

I have been interested in autism and am working within a field that gets to help different grades of children on the ASD spectrum (normally within a standard classroom, with an individual helper). When I was in a training, we learned about early detection and how sometimes this can lead to quicker and effective aid, especially in areas such as communication (speech) and social skills. Yet, so many people have said they were diagnosed after the school years. So I am wondering if a push to see the signs earlier is resulting in earlier diagnoses on average.

 

[Sarah S]

In my case they diagnosed my MBD =minimal brain damage (due to severe birth comlications .Got stuck and was out of air for way to long ) when i was 4 so they most defenetly knew that i had all kind of problems (MBD was the diagnose that was later rediagnoced as the current ADHD in the end of the 70 ´s ) & within said co morbid diagnosis even back then for MBD was also most of the criterias for current ASD as well as ADHD & ID and also Learning disabilies. There were 100 co morbid diagnosisunder MBD alone). only back then they dident know that this was a separate diagnose. So as many in my generation and prior i fell thru the chairs so to say with being diagnosed properly and get the right help.

This was sadly how it was back then. But as there has been enormous progress within this field of neuropsycological diagnosis this past years the odds of being able to earlier detect and help earlier in life has of course increased and thats good thing of course .

 

[Southern Discomfort]

I hadn't realized you could be older and still get diagnosed until I started researching it.

Yes. But of course the important word there is diagnosed. Not developed it. You are born with autism, you don't developed it later on in life.

Just want to make that crystal.

I was diagnosed at the age of 25 with Asperger's. I have a second cousin who has Asperger's too. Born in the same year, just about.

 

[Dadwith2Autisticsons]

You were an early advocate for your children! That is amazing!
Did you have experience with autism prior to your children? How did you know the signs to lead you to the idea before anyone else?

Thanks. To start, our first child kept spitting up or vomiting milk as an infant, and had latching on problems. This continued for many many months. Once soft foods fruits and vegetables were introduced he refused most foods presented, except bananas and carrots. Then the huge difficulties came later, when solid foods were introduced. He would either push away, throw, spit out or vomit out all foods, except precisely cut up chicken nuggets, and soft gummies in a packet. This continued a long time, and the doctors just said he was a picky eater and discounted our concerns.

Being very delayed talking also caused us concerns. No matter my daily hours of attempts at naming, describing, explaining, and comparing objects and actions in his environments, both through more natural learning ways, and also through the thousand or so flash cards we had, and through educational DVD’s, this child just kept mostly silent. He did not look timid or fearful, and did not act fearful, except when sensory triggers were present, but just could seem to echo on rare occasion a word, with no attempt to communicate much then, but spoke such echoed words at random and rare times.

Then this first child started wanting only certain family members to do certain duties for him, with him preferring me to handle most personal duties for him, with me needing to do them precisely as had done before, with regards to timing, location and preparation, as I was doing most duties for him as my wife had her own severe adhd type issues she had to focus on, and as details bother her or are difficult for her. To have any other help this child in those accustomed ways, or if I attempted those duties in a different way, lead to meltdowns from him, though those meltdowns were brief lived, if I then realized he needed the usual routines.

This started causing me to think, there is something about this child that is different, even though he did not appear physically different, except for being small in size, like us parents. I started to doubt his doctor, so we kept getting new pediatricians because we were frustrated with their ignorance, apathy, or waiting game approach. Not all picky eaters are just typical children with picky eating. They did not understand that. And not all very delayed talkers, are just typical children who would just talk later. They did not understand that. And not all children with meltdowns at age 18 months, were suffering from just “terrible two” typical child behaviors. They did not understand that. Putting those three facts together, should have made these doctors think.

At around eighteen months, besides the other difficulties as mentioned, I noticed once when this child walked, he had an unusual head sway. He never showed that sign again, but it made me think more that everything combined together, justified a thorough evaluation. When about three pediatricians refused to get him tested or evaluated, saying he was too young, and suggesting he would outgrow those issues, we went to the school system, and had their mental health experts test him.

Also, between age one and eighteen months, this child had a need to keep lining up objects, like coins, cars, and other objects, after inspecting them. He would not push the cars, and he seemed to have a precise order for those things. The cars, he would arrange in a row by color or size, and the coins he would arrange by size. If I attempted to take an object out of the line, he would either get upset, or he would just put that object back in place. For these routines or rituals, I just thought he was an organized child, as I was organized, too. I was not thinking anything much else about those specific routines. It was only when he was diagnosed later with Autism, did I understand why that child was behaving as he did, and why the delays and sensitivities.

While our child waited for that appointment weeks later, with their team of mental health experts that included their case manager, licensed psychologist, and speech therapist, I had further suspicions though that our child likely had some condition. I did not know it was Autism, and never even knew myself much about Autism then but just the stereotypes, nor researched conditions then, as the doctors kept trying to reassure us that everything was fine, and as we figured the school system medical professionals would figure things out.

During those two weeks of waiting, our first child’s signs and symptoms, atypical features, or difficulties remained, and became more apparent. Our child kept also wanting to either watch the same child educational dvd over and over again, and each and every day, which quite frankly bored me so much I thought I was losing my sanity, or he wanted me to watch only a certain portion of that dvd, over and over again. I knew he wanted those things by trying to either push me away or as he got very upset, if I took that dvd away at the end of watching it, with him attempting to put it back in, or with him trying to take the remote control and fast forward it to a certain spot.

On one day, this child got very upset, even if I just attempted to plug the television in, as he needed to do it himself. That was the moment I definitely knew this child had some condition, after I considered those other behaviors he had too, as what typical child would seriously care who plugged in the television, with a severe meltdown if I attempted to plug the tv in myself, and as he would immediately relax and be calm if I let him do this task instead? And what typical child would have big meltdowns, whenever we tried to drive a different route to the store? And what typical child at age 2 years would when we reached a certain point driving on different days, at that exact location, keep pointing up to the top of a telephone pole and attempt to say over and over “x.” After looking up, I finally noticed the crossed wires “on that pole only” looking like an x. Since when do children that age focus repeatedly on such, or notice such detail or difference?

Once the three medical professionals came to evaluate our first child, on three different dates spaced a week apart, each came to the conclusion he had Autism, after they attempted to engage him, through educational and other attempts, and when he got upset at them for things that most children would not get upset at, like when they attempted to teach him to read words from a book, that same book that he only allowed me to read to him, etc. So, to answer your question, all those signs and symptoms, led us to believe our first child had a condition. It was only after the school system personnel diagnosed him with Autism, that we researched Autism and agreed with their medical opinions.

So, after having researched extensively Autism, once the second child started showing many delays, behavioral issues, and sensory issues, we knew he had this condition too. We knew this when the second child was age two, but his doctors
refused to listen too, or take our concerns seriously, so we did the best we could as parents, knowing that his Autism would not be formally diagnosed until he was at least a year older, as he too showed was very small for his age, showed no outward signs of Autism, in medical settings, other than being nonverbal which should have been a big clue to the medical community though. The medical community likely just assumed he was a late grower, in all ways.

The second child was diagnosed by an Autism specialist. We provided much video and written evidence as well, of this child acting in all environments, with regards to showing his sensory issues, and stimming, shown only at certain times. He had hyperactive issues as well, and was diagnosed with ADHD too, by that specialist, not because of any testing there, as that child could not be tested there, as he refused to listen, understand, or cooperate for anything. His eyes were glued on his iPad, repetitively clicking on a certain app, with him not making attempts to look at the doctor when his name was called, and with refusal to get out of his stroller. We filled out questionnaires too though there. We even gave a copy of the ADOS-2 detailed test we gave this child at home. The doctor did not seem thrilled by that, but it was necessary as that child would not have cooperated with the doctor there for such, because it was a new setting, and with a new person present, namely that doctor, and an uncomfortable setting for that child.

 

[Butterfly88]

I was diagnosed when I was 7.

 

[Adora]

I was 31 when I discovered that I am on the spectrum.Before that people just thought I was shy and also was misdiagnosed with things like schizoaffective disorder before finding out that I am on the spectrum.

 

[Chrysanthemum]

During the latter grades of elementary school; however I had received interventions/therapies (such as speech (I had significant speech delay) and occupational therapy) from early childhood.

 

[VAW]

Aloha All,
I am curious at what age different children (or not children) were diagnosed with autism. I've read that they are trying to really put an emphasis on early detection, however, the age of diagnoses spans anywhere from before 1 year of age to as late as 50+.

My son was diagnosed at about 28... I think the hard thing about ASD is that so many of kids (like my son) are very intelligent so to me maybe he was shy? or that was just the way he was? I really didn't think he had a problem until much later when he wasn't going out, wasn't looking for a job like the other kids did, wasn't progressing socially like the other kids were (well actually adults) and looking back I can kind of see it in some things, but at the time I really didn't look at it as it was a problem, or something may be wrong until it was time to stand on his own and he couldn't or wouldn't do it. I also think that these days ASD is more in the spotlight, In my day I never heard of it. Maybe it was more rare or they hadn't put a name to it? I don't know but maybe that is why some kids are not diagnosed early, and later they get diagnosed?