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

[aitai]

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+.

 

[Progster]

I was diagnosed at 41 (now 48) Many of the members on this forum were diagnosed in adulthood. When I was a young child (in the UK in the 70s), they generally only diagnosed the severest of cases with classic/infantile autism, usually when they had both speech and behavioural issues.

 

[aitai]

That's amazing! I hadn't realized you could be older and still get diagnosed until I started researching it. I am actually looking at different ages to see how well Autism is being diagnosed as soon as possible. From what you are saying, I am confirming my idea that there is not an effective plan in place to help diagnose as soon as possible. Do you have a suggestion on where to find maybe parents of children with autism, since you've said that the majority of members here were diagnosed as adults?

 

[aitai]

I am looking for different ages that Autism has been diagnosed. Especially in children. Do you think people are learning more about Autism in general and is that leading to a quicker and earlier diagnosis?

 

[Progster]

o you have a suggestion on where to find maybe parents of children with autism, since you've said that the majority of members here were diagnosed as adults?

A few members here have children on the spectrum, as well as being autistic themselves. If you wait a bit, some will probably chime in soon. You could also look at the Parenting and Autism section, I see that you have already found this.

 

[Sarah S]

They dident find my ASD until i was 39 (now 48 ) and i had it since birth of course .

In general for us females its more common that we get our diagnose later in life due to we show our " tics " more Discrete & in other less revealing ways then men & therefore often geting below the radar then men due to this facts. So its not unusual that we get our diagnosis usely in our adult ages

 

[Autistamatic]

This is a very good place to find adults with autistic children as is any community of autistic adults. Autistic people are far more likely to sire/bear autistic offspring since autism is primarily inherited.
There are communities specifically for autistic parents of autistic kids on FB too.
As to age of diagnosis, the oldest age at time of diagnosis of someone I have spoken to personally was 74 and I have spoken to someone online who was Dx'd at 83.
@Progster mentioned the 1970s... Nobody was diagnosed with autism in the way we know it today back in the 70s because it wasn't acknowledged to exist then. It wasn't until Lorna Wing revived the work of Hans Asperger in 1981 that the autistic spectrum started to be talked about. By the mid 1990s, after a few thousand people worldwide had been diagnosed as having Asperger's Syndrome (myself included) the spectrum was added to the diagnostic manuals ICD & DSM.
The vast majority of autistic people alive today who have a diagnosis, received it after the manuals included the spectrum. I've only personally come across one other person who, like me, was diagnosed with Asperger's before the DSM/ICD inclusion.
Because of that timeline you can see why there are so many people diagnosed as adults and why so many in recent years. Hardly anyone was diagnosed on spectrum principles until about 25 years ago and most adult diagnoses in the last 15. That means that there are approximately 3-4 times as many autistic adults alive today who might have received diagnoses of autism had they been assessed in childhood, as there are diagnosed autistic children.

 

[Pats]

I was 59 - 62 now.
I have a grandson in second grade who is not diagnosed - yet. Too many stumbling blocks, and one being parent(s). But now the parents are okay with going with ADHD to get him some help.

 

[Streetwise]

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+.

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

 

[Nervous Rex]

Diagnosed when I was a 48-year-old child. Am now a 50-year-old child.

 

[clg114]

Diagnosed when I was a 48-year-old child. Am now a 50-year-old child.

It is my understanding that if you haven't grown up by the time you are seventy, then you don't have to. So, I got it made!

 

[Dadwith2Autisticsons]

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.

 

[BrokenBoy]

3 years.

 

[Bolletje]

I was diagnosed at 27. I’m very good at masking and my verbal IQ is very high. People just assumed I was a little shy, until a psychologist decided to look a little deeper into my recurrent depressions and burn-out symptoms and evaluated me for autism.

 

[Fino]

I was about 15!

 

[dragonfire42]

I was diagnosed in fourth grade, after my parents watched a documentary type show about Asperger's syndrome and thought how much it sounded like me. None of us really understood what it meant at the time, though - not until I was about fourteen and started looking into it myself.

 

[Dadwith2Autisticsons]

That's amazing! I hadn't realized you could be older and still get diagnosed until I started researching it. I am actually looking at different ages to see how well Autism is being diagnosed as soon as possible. From what you are saying, I am confirming my idea that there is not an effective plan in place to help diagnose as soon as possible. Do you have a suggestion on where to find maybe parents of children with autism, since you've said that the majority of members here were diagnosed as adults?

You are right. As of three to four years ago at least, in the US, there seems not to have been an effective plan to diagnose as early as possible, from our experiences. My last book was even about the failures of the traditional medical community to even notice and talk about our early signs and symptoms concerns, much less being able to diagnose our sons, when all the core signs of there were there screaming at them.

Either the pediatricians were clueless as they were not trained much about Autism, or had little analytical abilities, or they were getting pressure from others, like insurance companies, government and school systems, to delay diagnostics, to save money. Whichever is the case, we as parents kept telling them to screen for conditions or to make referrals to specialists. They wanted us to wait.

Instead, each visit they preferred to just look in our child’s eyes, up their noses, and in their mouths. I guess Autism is found out by them doing that (sarcasm.) No asking the parents questions, when delays and signs and symptoms were told to be occurring, no follow up comments or questions on my detailed written letters to them, telling them to look further into some possible condition, with me detailing why.

Those pediatricians preferred to either be in denial, play the waiting game, or blame the parents. And yet they wanted to treat. How the heck can you treat a child, if you make no attempt to find out the sources of the signs and systems, and if the diagnosis is not known, as treating a genetic condition could be handled totally differently than an environmental caused condition, if any treatment should be given at all.

Early diagnostics is important in our eyes, if some treatment could have helped for some condition, but more important so as the parents can understand their children with conditions more, and so as they know what things could help or make matters worse, and what things could not or should not be attempted changed. Too many parents are needlessly adversely affected more by delayed diagnostics.

Ironically, when our first child was age two, when no medical person wanted to diagnose, we had the local school system team of mental experts diagnose. I guess in that case, our school system was motivated to get an accurate diagnosis as they could get more funding for that, if we then put that child in their special program. We tried that program briefly, like for three days, but did not like what we saw, so pulled him out.

We verified that child’s Autism school diagnosis then with other local doctors. Of course then, the flood of Autism diagnoses came in, for that first son, from doctors, psychologists and psychiatrists. I guess they did not fear a lawsuit then, from giving any early wrong diagnosis, as they were not the first to diagnose the Autism. For our second child, he was diagnosed at three and a half, by an Autism specialist, at our initiation, after the other doctors refused to evaluate for Autism.

When a child does not talk by age three and a half, you would think that a doctor would have enough common sense to screen for nonverbal conditions, or to refer to a specialist, especially when they knew our first son had Autism, and when that second child had other Autism core signs and systems. Four to five different pediatricians refused, as well did others less untrained.. So, we had to give this child an ADOS-2 test ourselves, and when it strongly indicated Autism, we sent him to an Autism Specialist five hours away, who formally diagnosed the Autism.

So, yes, the medical community can do much better. Each hour and day that passes without a diagnosis, for those cases that justify such a diagnosis, means an hour and day of parents assuming things were either their fault, or the child’s fault, when neither could be true. When we as parents learned the diagnoses, we were not upset, but relieved. We knew parenting could not be that difficult for some typical child.

The only bad feeling I felt, after learning the diagnoses, was not how hard it would be for us as parents, but how harder it could be for our children in a society that has its own rigid rules and needs for people to act and behave, in classrooms, at work, in relationships, and in public. That is what I worry about. I have a high tolerance for stress, but our children have lower tolerances. I just want them to feel safe and happy, but to prepare them for the world too.

 

[Major Tom]

My son was diagnosed at 2 years old and I was diagnosed at 37.

 

[aitai]

My son was diagnosed at 2 years old and I was diagnosed at 37.

That's so interesting! Who was diagnosed first?

 

[aitai]

You are right. As of three to four years ago at least, in the US, there seems not to have been an effective plan to diagnose as early as possible, from our experiences. My last book was even about the failures of the traditional medical community to even notice and talk about our early signs and symptoms concerns, much less being able to diagnose our sons, when all the core signs of there were there screaming at them.

Either the pediatricians were clueless as they were not trained much about Autism, or had little analytical abilities, or they were getting pressure from others, like insurance companies, government and school systems, to delay diagnostics, to save money. Whichever is the case, we as parents kept telling them to screen for conditions or to make referrals to specialists. They wanted us to wait.

Instead, each visit they preferred to just look in our child’s eyes, up their noses, and in their mouths. I guess Autism is found out by them doing that (sarcasm.) No asking the parents questions, when delays and signs and symptoms were told to be occurring, no follow up comments or questions on my detailed written letters to them, telling them to look further into some possible condition, with me detailing why.

Those pediatricians preferred to either be in denial, play the waiting game, or blame the parents. And yet they wanted to treat. How the heck can you treat a child, if you make no attempt to find out the sources of the signs and systems, and if the diagnosis is not known, as treating a genetic condition could be handled totally differently than an environmental caused condition, if any treatment should be given at all.

Early diagnostics is important in our eyes, if some treatment could have helped for some condition, but more important so as the parents can understand their children with conditions more, and so as they know what things could help or make matters worse, and what things could not or should not be attempted changed. Too many parents are needlessly adversely affected more by delayed diagnostics.

Ironically, when our first child was age two, when no medical person wanted to diagnose, we had the local school system team of mental experts diagnose. I guess in that case, our school system was motivated to get an accurate diagnosis as they could get more funding for that, if we then put that child in their special program. We tried that program briefly, like for three days, but did not like what we saw, so pulled him out.

We verified that child’s Autism school diagnosis then with other local doctors. Of course then, the flood of Autism diagnoses came in, for that first son, from doctors, psychologists and psychiatrists. I guess they did not fear a lawsuit then, from giving any early wrong diagnosis, as they were not the first to diagnose the Autism. For our second child, he was diagnosed at three and a half, by an Autism specialist, at our initiation, after the other doctors refused to evaluate for Autism.

When a child does not talk by age three and a half, you would think that a doctor would have enough common sense to screen for nonverbal conditions, or to refer to a specialist, especially when they knew our first son had Autism, and when that second child had other Autism core signs and systems. Four to five different pediatricians refused, as well did others less untrained.. So, we had to give this child an ADOS-2 test ourselves, and when it strongly indicated Autism, we sent him to an Autism Specialist five hours away, who formally diagnosed the Autism.

So, yes, the medical community can do much better. Each hour and day that passes without a diagnosis, for those cases that justify such a diagnosis, means an hour and day of parents assuming things were either their fault, or the child’s fault, when neither could be true. When we as parents learned the diagnoses, we were not upset, but relieved. We knew parenting could not be that difficult for some typical child.

The only bad feeling I felt, after learning the diagnoses, was not how hard it would be for us as parents, but how harder it could be for our children in a society that has its own rigid rules and needs for people to act and behave, in classrooms, at work, in relationships, and in public. That is what I worry about. I have a high tolerance for stress, but our children have lower tolerances. I just want them to feel safe and happy, but to prepare them for the world too.

Thank you so much for sharing your story with me. I agree that more can be done especially when we can work together to diagnose early and create a more inclusive and supportive community where each individual can thrive regardless of the difficulties they have in interacting and doing certain things. I think in general that more and more people are becoming aware of Autism and what it is and so that alone is changing how a society acts and how even the medical profession is able to diagnose and then like you said the funding and support can be gotten. They should feel happy and safe in the world!