Do young children (especially girls) with ASD *always* show signs/traits that can lead to diagnosis?

[RMX07]

While my ASD diagnosis journey is just beginning, I do have a question that’s been bothering me quite a bit. I plan to ask my psychologist at my next appointment, but until then... I thought I’d also ask here.

First, a bit of backstory. I’m 33/F and have just received an informal diagnosis by a clinical psychologist who specialises in adult autism (formal diagnosis is expensive here so I’m still weighing up my options for that). As far as she’s concerned, it’s quite apparent that I’d be diagnosed ASD level 1 if I went through with a formal diagnosis, to the point where she’s comfortable writing a letter to my GP with this information for future health purposes, should I decide I don’t need a formal diagnosis.

When I finally plucked up the courage to tell my parents recently, my Dad wasn’t overly surprised and actually related to what I was saying (he has many ASD/Asperger’s traits but no diagnosis, and my Mum has even said as much in a semi-joking manner). However, my Mum didn’t believe me, was very dismissive, laughed at me, and refused my invitation to send her more info about how ASD presents in girls and women so she could learn about it. She simply wasn’t interested and said that I couldn’t possible have autism because there was nothing in my early development that indicated a problem.

The thing is, I know for sure there was at least one thing because she’s told me as much: I was a very early reader, starting to read at 18 months and able to read by age 3. She said I was a ‘born reader’ and I think that made her very proud. I doubt she’s aware of the connection between hyperlexia and autism.

My question is, do there need to be developmental delays of any kind in young children for there to be a diagnosis of ASD? My understanding is that there doesn’t, but I’m certainly not an expert and would like some information. Also, if an expert knows what to look for, will they always find something that indicates autism in a young child on the spectrum? Is it possible for a child to show no signs/symptoms until kindergarten/primary school?

I also understand that when I was a child (born in 1985), experts were still learning what to look for, especially in girls, meaning that whatever it was, it could have been missed by both parents and professionals (this seems the most likely scenario to me). But it still bothers me that my Mum says, with absolutely certainty, that there was nothing.

Of course, as I got a little older—from around age 7 or so—I know there were many indicators of ASD (repetitive behaviours, obsessive interests, unusual social behaviours, sensory issues, etc) because I remember them myself and we have some of them recorded on video by that point. But prior to that, I was just too young to remember and can only rely on my Mum’s account of things. I was hoping she could help me put the puzzle pieces together, but it doesn’t look like that will be happening.

Any facts/thoughts/opinions/advice appreciated.

 

[shysnail]

It sounds like your mum is quite against you being diagnosed, and that she's not going to be able to aid you in talking about your early experiences. There are definitely parents that take it as some sort of personal affront if their child is autistic. You have my sympathies.

In terms of developmental delays, my understanding was that what was previously referred to as Asperger's was distinguished from the rest of the spectrum by a lack of developmental delays. I was diagnosed with ASD as a child, but was early in talking, walking, etc.

 

[Mia]

The only indicators that I have from an early age that I was different from my other siblings, are things that my Mother indicated, even documented. I was: difficult, hyper-active, stubborn, bolted, had tantrums, (in fact she took photos of the tantrums). Also read at an early age before kindergarten and learned a second language easily. Suspect that she herself had similar traits in childhood, so they may have seemed usual to her. Few parents want to hear that their own childhood difficulties might be related to a spectrum disorder. So often they are in denial of such things. I can well imagine my own parent's reaction to being told a child of theirs was autistic, it would be denial and there's 'nothing wrong with any of us.' Even though my younger sister was non-verbal for some time. She was in my parents estimation, quiet and easy to get along with.

Doubt that any of my indicators could be construed as related to autism with the exception of the tantrums which may have been meltdowns. Tantrums usually have a purpose, meltdowns are a reaction to something and beyond a person's control. Tantrums usually stop when an individual gets what they want.

"Some experts believe that most children with hyperlexia, or perhaps even all of them, lie on the autism spectrum.[4][2] However, one expert, Darold Treffert, proposes that hyperlexia has subtypes, only some of which overlap with autism.[5][6] Between 5 and 20 percent of autistic children have been estimated to be hyperlexic.[7][8] https://en.wikipedia.org/wiki/Hyperlexia

It's highly likely that your parent has no idea what to look for as it relates to autism. Although a specialist in autism would be able to ask the right kind of questions of your parent. There is also the idea that as a female you would have been less likely to be diagnosed at a young age, very few females are unless they present with obvious textbook autistic traits.

 

[Suzanne]

No one said anything about aspergers when I was a child, seeing therapists. Just that I was very shy and would grow out of it and a bit behind.

I learned to read when I was 9 and according to information, I was not even crawling at the age one should. However, I now see and the therapist who diagnosed me agreed, that it was due to negligence and had I had the proper parental care, I would have developed fast and this was because as soon as I learned to read, despite how old, I quickly went from a non reader to an excellent reader and received a certificate of acknowledgment; mainly because it astonished the school that I went from 0 to 10 on reading account, in one month and this has been me throughout my life.

There were also other traits as a child that interested my now therapist. That I preferred the company of older ones to my peers; that playing with others was so frightening that just looking at them playing, made me want to run and hide.

And other tale tale signs, if those therapist at that time, had acknowledged aspergers in girls. In fact, today, it is only starting to be recognised that girls have aspergers too.

 

[rubicks52]

I don't have any answers to your questions, but I wanted to offer support in that my mom reacted basically exactly like yours. Even though she'd said in the past that she thought my dad has autistic traits, she refused to consider it for me or accept my offer for more information. It definitely hurt. I hope you find out what you're looking for.

 

[Progster]

No, you don't have to have developmental delays to be diagnosed with autism. Many people, those who would have been diagnosed with Asperger's under the old DSM IV, even have early development. It seems that your mother isn't aware of this, that autism is a condition with many traits all varying in severity, and that delayed development in childhood is no longer a criterion for diagnosis. Perhaps she is thinking of the more severe traits of classic autism, sees that you don't have these and so assumes that you can't have autism. Unless she has read widely and in depth on the subject, it is unlikely that she will know what to look for. I would suggest talking to her again, finding some articles or YouTube videos to look at, and explain how they relate to you both as a child and as an adult, and she may begin to 'see' it

 

[Tom]

I have gotten the impression that there is a school of thought that believes that unless it presents right from the beginning in early childhood it isn't autism. So one might run into it. There are also those who accept a wider variety of types in autism. I am not sure which is in the majority but suspect the latter.

Autism however, still isn't understood all that well yet, and there are many gaps in knowledge so its not surprising to find such divides and debates going on.

 

[RMX07]

In terms of developmental delays, my understanding was that what was previously referred to as Asperger's was distinguished from the rest of the spectrum by a lack of developmental delays. I was diagnosed with ASD as a child, but was early in talking, walking, etc.

Thanks, shysnail. That was my understanding as well, so it’s good to hear that from someone diagnosed with ASD as a child but early with milestones and no delays.

I was: difficult, hyper-active, stubborn, bolted, had tantrums, (in fact she took photos of the tantrums). [...] It's highly likely that your parent has no idea what to look for as it relates to autism. Although a specialist in autism would be able to ask the right kind of questions of your parent. There is also the idea that as a female you would have been less likely to be diagnosed at a young age, very few females are unless they present with obvious textbook autistic traits.

I think this is the most likely scenario as well. And while I can understand, to a degree, my Mum’s refusal to want to hear about my diagnosis, it’s still distressing and frustrating that she doesn’t want to help when she likely has most of the answers to my questions. It’s interesting to hear how you presented as a child compared to what I know (i.e. have been told) about myself. I suspect I wasn’t as much of an angel as I seem to be in the retellings of old stories, because another thing that I know about my mother was that she could not stand tantrums from other kids (still can’t) and would not tolerate tantrums from me. I have my suspicions that I learned very early not to behave ‘badly’ or ‘strangely’ in public. Another example of this that I know about was asking inappropriate questions: e.g. “Why is that lady so fat?” I probably embarrassed my Mum a lot.

There were also other traits as a child that interested my now therapist. That I preferred the company of older ones to my peers; that playing with others was so frightening that just looking at them playing, made me want to run and hide.

Interesting. I don’t think I had the same reaction to kids my age when I was really young, though I have heard of that happening and can relate to preferring the company of older kids or adults. For me, other kids were kind of just there; they existed, and sometimes I played with them, but I think I was mostly quite passive. I have a home video of my 8th birthday party (which my Mum arranged and invited 8 or so girls from my class who she considered my ‘friends’, though only one of them really was) and through the whole video where we’re playing party games and eating party food (also organised by my Mum) I only speak to one of the girls, and it’s to answer her question or correct her with something. I guess even back then I didn’t much care for groups, nor attention.

I don't have any answers to your questions, but I wanted to offer support in that my mom reacted basically exactly like yours. Even though she'd said in the past that she thought my dad has autistic traits, she refused to consider it for me or accept my offer for more information. It definitely hurt. I hope you find out what you're looking for.

Thank you, rubicks52! While I wouldn’t wish this situation on someone, it’s a comfort to hear I’m not the only one. I hope things improve for you, too.

 

[RMX07]

No, you don't have to have developmental delays to be diagnosed with autism. Many people, those who would have been diagnosed with Asperger's under the old DSM IV, even have early development. It seems that your mother isn't aware of this, that autism is a condition with many traits all varying in severity, and that delayed development in childhood is no longer a criterion for diagnosis. Perhaps she is thinking of the more severe traits of classic autism, sees that you don't have these and so assumes that you can't have autism. Unless she has read widely and in depth on the subject, it is unlikely that she will know what to look for. I would suggest talking to her again, finding some articles or YouTube videos to look at, and explain how they relate to you both as a child and as an adult, and she may begin to 'see' it

I think you might be right, and hopefully after a bit of time, I can broach the subject with her again. I probably won’t have all the answers to my questions until I do. Thanks for your input.

I have gotten the impression that there is a school of thought that believes that unless it presents right from the beginning in early childhood it isn't autism. So one might run into it. There are also those who accept a wider variety of types in autism. I am not sure which is in the majority but suspect the latter.

Autism however, still isn't understood all that well yet, and there are many gaps in knowledge so its not surprising to find such divides and debates going on.

Yes, this is the kind of thing I was wondering about. I think I remember Tony Attwood, in some interview somewhere, say that he is able to diagnose it by age 3. But I don’t really know what that means exactly. Are there always signs in very early childhood? Perhaps not developmental delays, but still signs of some sort (eye contact, a lack of wanting to share or switch activities or whatever)? Would there definitely have been signs for me at that age, and it was just that no-one thought to connect them with autism because of the lack of knowledge then? ... Then again, you still hear of many cases, particularly in girls, where even the experts aren’t sure until the child goes to school and it becomes more obvious. So this is why I’m a bit confused.

 

[Suzanne]

I have a home video of my 8th birthday party (which my Mum arranged and invited 8 or so girls from my class who she considered my ‘friends’, though only one of them really was) and through the whole video where we’re playing party games and eating party food (also organised by my Mum) I only speak to one of the girls, and it’s to answer her question or correct her with something. I guess even back then I didn’t much care for groups, nor attention.

Very interesting, because similar happened to me, accept I did not even talk to one person who was invited. In fact, a sensation of fear and bewhilderment.

 

[Judge]

Difficult question. Though I'd be inclined to think that such a question is largely incumbent on the parents. How good their powers of observation may or may not be. Though even then there are no guarantees of a proper diagnosis.

I was always intensely focused on one thing at a time, didn't speak in sentences until I was age four, and was perfectly content playing by myself for hours on end. My own parents decided around the age of five that my various traits and behaviors warranted professional evaluation. To them, something about me just didn't seem quite right.

Which translated into an on-base general practitioner examining me and reassuring my parents that I was "fine". Decades before Aspergers Syndrome was acknowledged by the American Psychiatric Association. The subject of autism never even came up. Leaving me essentially a casualty of a lack of science and medicine at the time.

In this respect it was the system that failed me- not my parents. Leaving me to stumble onto my own autism many years later.

 

[Bolletje]

I was a very precocious and social child, it wasn’t until my teenage years that my differences became apparent and it wasn’t until my late twenties that I was diagnosed.

 

[Tom]

Here is one article that talks about not all displaying symptoms in childhood.

Why It Takes So Long to Get a High Functioning Autism Diagnosis

 

[Khendra]

Good responses, and nice link from Tom to help explain the phenomenon.

But yes, you don't need 'developmental delays' per se for diagnosis, just other signs of autism, which may include things like dyspraxia, head-banging or other repetitive stims, troubles with reading social cues (sarcasm is a big one for me--needs to be obvious or I'll take it literally), and other things that can fly under the radar when younger, but become more problematic once one hits adulthood and has to deal with greater demands and responsibility in the social and working worlds. I also was hyperlexic, did well academically, and just seemed socially awkward and/or shy to most. It was adult friendship and employment struggles that led me to seek diagnosis in my late twenties, and receive it.

 

[RedOrangeYellow]

I was a very early reader, starting to read at 18 months and able to read by age 3.

Oh wow this was me too. I didn't know the name, Hyperlexia. Like you my parents were proud I could read so well and thankfully supplied me with lots of books but I don't really remember anyone officially taking that much notice of the fact that while my classmates in grade one were stringing words together about Spot the dog, I was reading the entire Chronicles of Narnia. It was the early 80s in a small regional town though, knowledge of autism and in particular girls with autism would have been non existent.

 

[Gracey]

I'm led to believe that demand has to exceed capability.

By that I mean you may have been able to manage a routined and very familiar home environment but may have wobbled on starting school.

The demands of a different environment and social setting will exceed your capabilities. Initially.


Edited to add,
If mum could cope with and handle any or all of your behaviour then she's unlikely to view it as 'a problem.

She may have accepted it's just who you were as an individual.
You have to presume that mum would have to know what was considered usual at various ages and stages and where any cut off points would be for a child displaying anything but 'usual' in order to warrant futher investigation.

Being slightly ahead in development won't raise any eyebrows, delays will though.

 

[SusanLR]

My parents were both deceased by the time I got my diagnosis.
In fact, the grief counselor I was talking with after my Mom's death is the one who
recognised the Asperger signs and suggested seeing a specialist.
I'm sure though if my parents were living when I was diagnosed they would have reacted the same
with a disbelief reply something like: " You aren't autistic. You were too intelligent for your age
right from the beginning."
Intellect was their preconceived notion as to what autism was about.
I had about every other trait though. But, way back then no one thought about ASD or Aspergers.
By the time I was 13 I just got the label of Panic disorder and agoraphobia that stuck with me until
I was 58.

When my testing and interviews started at that time, the psychologist who did them found things
going back as far as three that pointed to ASD.
I did everything early, according to what my Mom had told me about my infancy.
But, I am also one of these people who have memories back to the day I was born
so I could tell the therapist many things that started around age three.

Not playing with other children. Content to play alone and stay in my room where I had an obsession
with music and records using a plastic child's record player. One record at a time.
I could do that all day. But, first, to start my days before age five, there were food issues and
another obsession with having a special large spoon that I would grab and go outside after breakfast
to a certain area and dig. I thought there was something special there and I was going to find it.

The food issues involved only eating from a certain plate because it was divided into three sections
so none of my food touched. Only one cup for drinking and I had a certain chair to eat from.
No other would do. Also I had to have a wash cloth that was wet for wiping my fingers of anything
that might get on them when eating.

There were certain children's shows, certain cartoons, and music shows that I had to watch on TV.
As an infant I laid on a palette on my stomach in front of the TV. When I was a toddler, if I sat
anywhere it had to be a rocking chair and I rocked and kept on rocking.
I even started sleep walking by the age of five and that's where they would find me, in the
rocking chair rocking.
These were some of the things my therapist knew pointed towards autistic behaviour.
And also selective mutism.

 

[shysnail]

I don't think as a young child, I had a cluster of behaviours that would have made anyone look at me and say, "She's autistic." I did individual things (rocking when I was distressed, a lot of playing alone, not easily making friends, obsessive interests) but none to a point where I think most would have seen me as much except a shy, well-behaved child. I struggled at playgroup and nursery, was very nervous about being separate from my mum, but again, lots of kids are like that.

It's more that those things didn't go away, and once I reached school it began to be more apparent that I wasn't simply shy. It wasn't until I was in year 4 (age 9 or so) and had started refusing to go to school that a teacher mentioned autism as a possible explanation.

 

[RMX07]

Which translated into an on-base general practitioner examining me and reassuring my parents that I was "fine". Decades before Aspergers Syndrome was acknowledged by the American Psychiatric Association. The subject of autism never even came up. Leaving me essentially a casualty of a lack of science and medicine at the time.

I’m glad you’ve found some of your answers now, at least. But yeah, I hear you. I was born just a few years before Asperger’s Syndrome was added to the DSM, so I’m sure that also had plenty to do with it being missed.

Here is one article that talks about not all displaying symptoms in childhood.

Why It Takes So Long to Get a High Functioning Autism Diagnosis

Thanks for the article, Tom! That’s quite a good one.

But yes, you don't need 'developmental delays' per se for diagnosis, just other signs of autism, which may include things like dyspraxia, head-banging or other repetitive stims, troubles with reading social cues (sarcasm is a big one for me--needs to be obvious or I'll take it literally), and other things that can fly under the radar when younger, but become more problematic once one hits adulthood and has to deal with greater demands and responsibility in the social and working worlds. I also was hyperlexic, did well academically, and just seemed socially awkward and/or shy to most. It was adult friendship and employment struggles that led me to seek diagnosis in my late twenties, and receive it.

Seems our journeys are very similar, as you mentioned in another post. I wondered about dyspraxia (I’m clumsy and not very well coordinated even as an adult, and remember this also being true as a child), but I did do dancing and seemed to be OK at that, so there weren’t any alarm bells. I recently learned about postural disorder, which is apparently a type of sensory processing disorder like dyspraxia, and that seems to fit with what I know about myself, too. My posture has always been terrible, even as a child, and I have back issues now as an adult. But it was always just “Sit up straight!” and that was that. *shrug*

Oh wow this was me too. I didn't know the name, Hyperlexia. Like you my parents were proud I could read so well and thankfully supplied me with lots of books but I don't really remember anyone officially taking that much notice of the fact that while my classmates in grade one were stringing words together about Spot the dog, I was reading the entire Chronicles of Narnia. It was the early 80s in a small regional town though, knowledge of autism and in particular girls with autism would have been non existent.

Yep, certainly a familiar story. And I didn’t know the name either until I began my ASD research. The term ‘hyperlexia’ wasn’t around when we were kids.

Apparently I could read perfectly well long before school, but on my first day of kindergarten or preschool or whichever it was when teachers actively taught kids to read, I came home and said to Mum, “I can read!” to which she replied, “Yes, I know!” .... She loves to tell me that story. I guess I must have thought you had to attend school to be able to read or something.

If mum could cope with and handle any or all of your behaviour then she's unlikely to view it as 'a problem.

She may have accepted it's just who you were as an individual.
You have to presume that mum would have to know what was considered usual at various ages and stages and where any cut off points would be for a child displaying anything but 'usual' in order to warrant futher investigation.

Being slightly ahead in development won't raise any eyebrows, delays will though.

Agreed. The thing is, I’m an only child, so my parents didn’t really have anyone to compare me to, except maybe my cousins but I guess that’s not quite the same. And, as you say, being ahead in development is not usually cause for alarm. This, coupled with the lack of knowledge of ASD at the time, is why I think some subtle signs being missed as a young child is probably the most likely scenario for me.

Thanks for your input, Gracey.

I don't think as a young child, I had a cluster of behaviours that would have made anyone look at me and say, "She's autistic." I did individual things (rocking when I was distressed, a lot of playing alone, not easily making friends, obsessive interests) but none to a point where I think most would have seen me as much except a shy, well-behaved child. I struggled at playgroup and nursery, was very nervous about being separate from my mum, but again, lots of kids are like that.

It's more that those things didn't go away, and once I reached school it began to be more apparent that I wasn't simply shy. It wasn't until I was in year 4 (age 9 or so) and had started refusing to go to school that a teacher mentioned autism as a possible explanation.

It’s good that you had a teacher who knew what to look for. I think that’s still pretty rare. I can relate to some of what you mentioned—I was also quite clingy with my mum, and I still remember the anxiety I felt in new situations and around kids I didn’t know when I was really young... But as you say, lots of kids are like that. I think I really loved the learning part of school, though, and was happy enough to ignore everyone else when they got in the way of my learning. That, and Mum wouldn’t have put up with any ‘bad’ behaviour. I’m not sure how she would have handled my refusal to go to school.

 

[Joshua the Writer]

Girls are often under-diagnosed, primarily due to a stereotype that Autistics are mainly boys.