Diagnosis of HFA at 2.5 year old: How does this affect my child?

[anthoskate]

But that being said, does anyone feel they wanted to learn how to act typically as a very young toddler so you could blend in easily growing up?

I very much doubt that I would have been aware of my differences at that age.

Maybe at the age of 6 or 7 but not 2.5 years old.

 

[Marissa's Mom]

AsheSkyler, it sounds like social skills you are talking about can be taught after she's much older like 5 or 6.. Based on what you described, it seems very hard for parents to teach that. For example, we would not know that she's looking at someone's feet rather than the whole person when she's talking. Just like you said, those are little subtle things, and professionals who run "social skills" class may be better at? Maybe we should watch out for those "classes" when she gets older?

Haha. I still think reading and playing are much more fun than gossiping and shopping!

And definitely a few hints about social skills and reading body language! Most of body language is pretty forward, but some of the finer points like "if a person's feet are pointed toward you when you're talking, they're interested, and if their feet are pointed away then they don't like you much". Same thing with how they prefer to keep their legs crossed around you. Little subtle things people don't realize they do that gives them away entirely.

I actually spent more time wondering what was wrong with everybody else! They were horrible readers, they had a limited imagination, and all the girls spent more time gossiping about boys and shopping even in elementary school rather than fun things like reading books or playing in the yard. It wasn't until I was a teenager before I figured out I was the odd one and everybody else wasn't potentially brain-damaged.

 

[Marissa's Mom]

Thesaurusrex, it's good to know you could grow up to have a set of friends even if you don't try to be more typical. My concern was that she'd be an easy target for bullying unless we address her difference while she's very young.

I've read of many studies that claims that ABA is effective when done by age 2-3, but at the same time, I'm a bit skeptical about how they measure the effectiveness. It's certainly not measured by the child's success or happiness. We'll explore the ABA option too, but I should be cautious about what they are accomplishing to do and how my daughter is responding to it;-).

While I agree with others' suggestions that some guidance would not go amiss, I definitely don't think enforcing 'normal' behaviours would be helpful.

If I had been diagnosed when I was younger (I was diagnosed in my early 20's), I certainly feel that any attempts to apply neurotypical behaviours to my younger self would have been damaging and I imagine would have stifled my freedom to explore my own interests and individuality - I was not concerned about adhering to social norms, and had a consistent group of 'friends' (aquaintances?) who allowed for me to be myself. In my primary school years (around 7-10 years of age) I had female friends who were older and sort of guided and 'mothered' me. School-age girls (and really any age woman) will often approach an oddball with (passive)aggression or nurturing.

It is not all doom and gloom, and you should certainly do your own research (avoid AutismSpeak$, though, ugh), but the best advice I think any parent can heed is to encourage and allow for their children to flourish in ways that are natural for them, and guide them where needed.

 

[Marissa's Mom]

Anthoskate, yes, I'm pretty sure about this. But, what I'm wondering is that if she receives therapy to "normalize" her behavior before she even notices them, she may struggle less when she's older.. I'm not entirely sure how early ABA works, but just as an example, if she's taught to look at the general facial area when talking to someone at her age, it may be easier for her to learn it now than later?

I very much doubt that I would have been aware of my differences at that age.

Maybe at the age of 6 or 7 but not 2.5 years old.

 

[Marissa's Mom]

I really hope I can learn to accept entirely who my daughter is. I think I'm getting much better lately, and I really love little things my daughter does differently than other kids. At the same time, the most difficult time for me is to join a play date or a class (music, dance etc.) with other moms when they proudly talk about how well their kids are doing socially. I know my daughter is the one who's affected the most and not me, but as a new mom who doesn't have many friends, it's very isolating to feel against going out to meet other moms.

I have a wonderful time reading to my daughter, going to a park/museum, and seeing her growth at her own pace just as a family. On the other hand, when she seems to be developing more, I start to expect more (in terms of social skills) and ask her to do more "normal' things (paying attention, responding, etc.).

If anyone has a suggestion on how a mom of a child with HFA to develop friendship with other parents (or anybody just to keep you connected to the community), that would be wonderful.

It's more about how is it affecting you, I suspect. If you can identify what assumptions you had made about what life would be like as a parent, especially about how your daughter "knows" she's loved v. how you want to show love, that will help you both.

My mother could not understand why I hated being hugged, why when she said, "I love you" my reply was mechanical "I love you too." She took my stimming personally and criticized me heavily because I didn't act like everyone else: "why can't you be like the others?"

I didn't meet the brag threshhold until much later, and even then, she complained about my coldness.

Jim Sinclair wrote an essay titled, Don't Mourn for Us, in which he said:

"Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle. But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have...the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person."
​

His essay goes on to discuss how fantasizing over how life was supposed to be, or expected to be, and the parent-child relationship that was anticipated, separates parents from the child they do have. That child can form meaningful relationships, but they won't meet the Hallmark standard for sentimental sloppiness (yeah, I'm editorializing with that last phrase).

Sinclair's essay goes on to point out that a parent may grieve the loss of their child--that is, the fantasy child, and take it out on the actual, loving, needy real child they have. You sound like you're in a much more accepting place, in terms of things, but I'll close the point with his words, which were written to parents who don't cope so well:

"...you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it--and then, perhaps gradually, perhaps abruptly, you had to recognize that what you looked forward to hasn't happened...and isn't going to...It isn't about autism, it's about shattered expectations. I suggest the best place to address these issues is not in organizations devoted to autism, but in bereavement counseling...where parents come to terms with their loss...and learn not to take out their grief on the child that remains."
​

You can't live your child's life for her. You can find out what she thinks love looks, feels, smells, tastes, and sounds like. What makes her happy? It may not be the same as what makes you happy. But you may find that she follows your example, and learns what makes you happy, and you have an asymmetrical demonstration of affection that feeds you both.

 

[Nitro]

please check your private message from me...I do not offer advice publicly at this stage of my game

 

[AsheSkyler]

AsheSkyler, it sounds like social skills you are talking about can be taught after she's much older like 5 or 6.. Based on what you described, it seems very hard for parents to teach that. For example, we would not know that she's looking at someone's feet rather than the whole person when she's talking. Just like you said, those are little subtle things, and professionals who run "social skills" class may be better at? Maybe we should watch out for those "classes" when she gets older?

Haha. I still think reading and playing are much more fun than gossiping and shopping!

True that, I was thinking long term. Right now, it's time for fun in the sun and grass!

Still, can't hurt to impart your socializing wisdom as she grows up. I have no idea if there are classes for body language. Most of the stuff I learned I picked up on from watching our pets interact and my mom had a fascination for studying stuff like that.

 

[Kari Suttle]

We were concerned about her because she has limited eye contact, joint attention, and back-to-forth conversation skills. We weren't sure if she was being a typical two year old or being atypical, and we thought the doctor can observe what she does (vs. listening to what we say).

I babysit a two year old boy, have since he was two months old and at least in comparison to him, it sounds like that is atypical. He just turned two and he's very good at single-word-sentence answers and questions and has just begun stringing two words together into an actual sentence when talking. An example of a typical 'conversation' might be:

Me: Name, I need you to sit down in the chair.
Toddler: Sit down?
Me: Yes, I need you to sit down.
Toddler: *sits down*

Or...
Toddler: *points at a Lion in a book* Lion? Roar!
Me: Yes, you're right! Good job, that is a lion. Lions go roar.
Toddler: Lion. Roar!

Or...
Toddler: *comes up to me holding a toy train* Salty! *note: its the train character's name*
Me: You found Salty!
Toddler: Salty. Cho-choo! *runs off again to go play with his train on the floor*

This is how most of his conversations go. Just within the past week or two he has begun stringing two words together, his main one seems to be 'okay now'. He makes eye contact just fine, and he plays with his toy trains while watching tv for most of the day, focusing on one at a time but going back and forth. He likes reading just fine, but he prefers playing with his trains, watching cartoons (especially the train show), and playing out back. He makes eye contact when talking to me and being talked to just fine, and initiates 'conversation' as well.

Should we be seeking help improving her eye contact and play skills, or should we just wait and see what happens?

I don't know. Honestly, the two year old i babysit is very shy with strangers. I'm not sure how receptive toddlers are in general to outsiders interacting with them. Perhaps in the future this might be a good idea, but i would imagine that for now you are the best person to help your child along. You know your child best, after all, what he/she is and isn't ready for, what feels right for him/her. What does your child know, in relation to preschool stuff? Perhaps teaching your son/daughter the ABCs, colors, animals and their sounds, parts of the face/body, etc can help with eye contact and conversation skills. Its something they should be learning eitherways, and its conversation. When i started teaching the toddler i babysit those things i had to prompt him a lot at first, but eventually i didn't have to. He loves it, loves getting praised for getting the answer right. He loves 'helping' me and learning things (mostly getting them right), perhaps simple things like that could help your kid.

Sorry if i rambled! I got carried away since i babysit a two year old myself. Above all, as long as your kid knows you love him or her no matter what no matter what they do wrong that's the most important thing. At that age, family and caretakers are their world. Growing up your kid's gonna have social deficits, sensory issues, attention issues, all that, and no amount of ABA or special therapy will fix that, its how HFA/AS goes. It makes you feel like an outsider in society. Your kid needs, most of all, for you to love and accept them and to help them along in whatever way they need.

 

[Meistersinger]

I was't diagnosed until I was 54. Looking back at what little public school records still exist in my possession, I sometimes wonder why I never got counseling, except for mom and dad meting out corporal punishment when the saw the negative comments on my sociability, and my lack of executive function and dysgraphia when report cards came out every 8 weeks. Part of the reason that no one heard of autism in the 1960's. (Considering that Autism didn't appear in the DSM until the 1980's didn't help.). Besides, mom and dad did not believe that mental illness existed. They believed, like Louis B. Mayer, anyone who sees a psychologist ought to have their head examined. It might have been easier on them if I had an intellectual disability: it would have been easier for them to put me in a state hospital and forget all about me, like some of my distant cousins who were "blessed" with an intellectual disability.

That attitude and stigma still exists to this day on both sides of the family, even though I have a niece and a nephew that are low-functioning and non-verbal, and a 3rd cousin who is high functioning, and is just as awkward and naieve as I am. While they are loved by their respective parents, most of the rest of the clan want nothing to do with the four of us.

 

[Aspergirl4hire]

But that being said, does anyone feel they wanted to learn how to act typically as a very young toddler so you could blend in easily growing up?

At 4, I was very aware that I was different--by 9, it was starting to get negative attention from other kids, and at 13, it was disastrous. I was unusually pretty, had a strong foreign accent, and was too smart, and also spent too much time in the library, so fitting in was not going to happen anyway. I didn't want to learn how to act typically because it had no value to me--I was bored by the effort (why would people want to do that?)--until fitting in became necessary as a survival skill. Physical attractiveness gets a pass for a while, and a 'foreigner' is an exotic, but people don't like strange.

 

[SonoranPrincess]

Let your 2 year old be a 2 year old. Just be aware she may need help navigating the waters with "neuro normies." One thing that sticks out to me in this discussion is how I wasn't diagnosed for 6 decades, partly because most of my family members have Aspergers. Some are also either chronically depressed or bipolar. As a result they thought I was "normal." It took years for me to realize that I wasn't neurotypical. My family continues to have no insight about the situation.

 

[radasp]

This upsets me no end! A two year old is in the PROCESS of developing her brain and body. Contrary to the irresponsible psychology-psychiatry industry (yes, it's about making money) children DO NOT follow a rigid schedule of development; HFA (or Aspergers) especially have precocious intelligence, but take more time to pay attention to other aspects of life. The person you took your child to is incompetent; once she's sucked into the Autism pipeline, she will never escape the autism machine, never be allowed to discover her native talents, interests and personality. If you wish to read about the "other side" of ASD:
Asperger: The HypoSocial Human | Investigating the Asperger brain as a legacy of ancestral humans

 

[Marissa's Mom]

I think a big reason why you (and many other adults) weren't diagnosed is because they weren't diagnosing HFA/asperger's until the late 80's. Now, the internet provides all the red flags for parents, and babycenter.com keeps sending all the symptoms even if you aren't comparing your child with other kids actively. :-(.

I am now thinking that it's best to receive any help available to her to keep her from getting depressed etc. in the future because of her lack of social skills which can be addressed earlier.

Let your 2 year old be a 2 year old. Just be aware she may need help navigating the waters with "neuro normies." One thing that sticks out to me in this discussion is how I wasn't diagnosed for 6 decades, partly because most of my family members have Aspergers. Some are also either chronically depressed or bipolar. As a result they thought I was "normal." It took years for me to realize that I wasn't neurotypical. My family continues to have no insight about the situation.

 

[Marissa's Mom]

Thank you for providing your insight. I agree we have to do everything to discover her talent, and she seems very smart. My hope is that if we do therapy now, she may be able to escape from these social skills classes etc., when she is old enough to go to elementary school, and she's no longer in the pipeline..
Her developmental ped was rude and didn't seem to be competent (I completely agree with you here), but he also mentioned that he think half of college professors might have HFA at the same time. So, his approach was that it's better to have her receive therapy (which may be good for a typically developing kids too) than not doing anything.

It is good to hear about her great potential as a productive member of the society! Just wanted to make sure she will not be constantly depressed and feel accepted when she grows up. It's very sad to hear everybody on this forum talking about depression that stems from autism. I completely understand you would be depressed when no one seems to understands you and want to help my daughter as much as I can.

This upsets me no end! A two year old is in the PROCESS of developing her brain and body. Contrary to the irresponsible psychology-psychiatry industry (yes, it's about making money) children DO NOT follow a rigid schedule of development; HFA (or Aspergers) especially have precocious intelligence, but take more time to pay attention to other aspects of life. The person you took your child to is incompetent; once she's sucked into the Autism pipeline, she will never escape the autism machine, never be allowed to discover her native talents, interests and personality. If you wish to read about the "other side" of ASD:
Asperger: The HypoSocial Human | Investigating the Asperger brain as a legacy of ancestral humans

 

[radasp]

Honestly! There a 7 billion people on this planet right now and billions more who have come and gone. How did they do it - raise children to become adults without an army of know-it-alls to tell them what to do every second of the day? And we call ourselves civilized? We're driving our children crazy! Let them be children, not experimental subjects for psychologists and pharmaceutical companies.
LEAVE THE CHILDREN ALONE.

 

[AsheSkyler]

Honestly! There a 7 billion people on this planet right now and billions more who have come and gone. How did they do it - raise children to become adults without an army of know-it-alls to tell them what to do every second of the day? And we call ourselves civilized? We're driving our children crazy! Let them be children, not experimental subjects for psychologists and pharmaceutical companies.
LEAVE THE CHILDREN ALONE.

I say any kid not raised in the dirt with the bugs is one deprived kid.
Unless they have allergies. I dunno what to do with a kid with allergies. A box of tissues and a book?

 

[Dawn Marcotte]

It is great that you have a diagnosis so early. Many studies have shown that early intervention can help our kids later on. At this age and probably until she starts school I would suggest focusing on social skills (eye contact etc) and sensory activities. She may not seem like she has issues with sensory (touch, taste, smell etc0 but the more you do now to help her brain understand and process stimuli the better she will be later.

You may want to watch her closely for other symptoms of a non-verbal learning disability. This was the hardest thing for my daughter in terms of interacting with others. She had to be taught what facial expressions mean, tone of voice meanings (don't make mommy use her mad voice) and eye contact. Once she learned them she did much better interacting with others.