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

[Marissa's Mom]

Hi there. My daughter (2.5 years old) was just diagnosed with mild HFA at a university hospital after waiting for the appointment for 6 months. After hearing our descriptions on her behavior, the doctor simply diagnosed her by checking check boxes of DSM 5 without interacting with her or observing her. My daughter is not in preschool, and she has a mild temperament and very few sensory sensitivity. 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).

My questions is how this diagnosis would help her overcome any issue she may have in the future. Right now, she sleeps and eats (though a little picky) just fine. Also, she is okay if she doesn't follow the same schedule everyday. She's obsessed with books, and she likes them much more than her toys. This in addition to the things I mentioned already (eye contact, joint attention, conversational skills) are the main challenges now, though these things don't seem to bother her, and she still seems to enjoy every day very much. Many kids her age don't really talk, so she's ahead of them in many ways! She already receives OT/ST, but we have run out of things to talk about lately. Should we be seeking help improving her eye contact and play skills, or should we just wait and see what happens? I was assuming that the doctor will suggest something new for us to do, but they just diagnosed her with autism, and that was the end of the appointment with no constructive suggestions. Even after the diagnosis, I'm still not quite sure if she is just presenting a unique personality within the range of normal, and I don't want to give her too many boring therapies, when she'd rather want to be playing at a park or looking at her favorite books.

Any suggestion what we can do now? I know this is really early for someone to be diagnosed to have high functioning autism. Does anybody who was diagnosed later wish he/she did something as a toddler? We have though about enrolling her in a part time preschool so far and contacting the local autism agency for possible ABA sessions. I apologize for the lack of my knowledge in this area in advance, but I'm hoping we can get some advice with regard to how we help our daughter navigate through this.

 

[clg114]

I was not diagnosed with Asperger's until late adulthood. While I have always been able to take care of myself and my family, it hasn't always been great. When I was a kid, not a lot was known about AS or HFA. Had my doctors or parents known more about AS or HFA while I was young, I might have received consoling that could have made a big difference in my life. Because of this, I believe young kids with AS or HFA should have consoling that may help to better deal with their weaknesses and more importantly, to take advantage of their considerable strengths. You may have to find the right doctor, but it will be worth it. Like Dr. Temple Grandin say's "the worst thing you can do, is nothing".

 

[Sass]

I was diagnosed late in life, after my son was diagnosed (he was 5 at the time). This may not work for everyone, but my son isn't in any therapies right now, as he isn't having any major difficulties. As for things like eye contact, trying to force that can actually do more harm than good.

Edited to add: that's not to say we don't do anything for my son, but we try to give him room to be himself, rather than making him conform to a set of rules for 'normal' kids that he may not feel comfortable with.

 

[Marissa's Mom]

Thanks for the advice! Sass, do you use any other parenting training techniques for high functioning autistic children? Any recommendations on resources for us to read?

Also, I'm curious if this is how typically autism is diagnosed (just going over he dsm criteria with parents).It kinda feels like I self diagnosed her and got the md's approval on the diagnosis.

 

[Sass]

Thanks for the advice! Sass, do you use any other parenting training techniques for high functioning autistic children? Any recommendations on resources for us to read?

Also, I'm curious if this is how typically autism is diagnosed (just going over he dsm criteria with parents).It kinda feels like I self diagnosed her and got the md's approval on the diagnosis.

Hmm, I don't really do anything that is a 'parenting an AS child' thing, I just give both my kids room to express themselves in the ways they need to, and support them as required. I sort of lean towards the gentle parenting side of things, and really feel that as a parent and guardian, it's not my job to force them to conform or punish them for things they can't change. I know from my own childhood that there's nothing worse than feeling that your parents are not the stable, loving, accepting support system that you're expecting them to be!

Re: diagnosis, my son and I were both diagnosed in Australia, so it'll be different. He was assessed by a psychologist, speech pathologist and paediatrician, who all spent time interacting with him. Your daughter is very young though, so that could be why there was less of a focus on interaction? I dunno, it still sounds a bit odd to me for a professional to not try and spend some time with the child during diagnosis.

 

[Sass]

Oh, and if you're going to do some reading on parenting issues and autism, try to keep away from things that paint autism as a burden or an illness, or anything that spends all its time telling you how terrible it is to have to parent a kid on the spectrum, and how amazing you are for doing it. It kinda skews the dynamic, and you end up with a lot of parents who resent their kids, want to 'cure' their kids, or use their 'autism parent' status as some kind of badge of honour to hold themselves up as wonderful 'in spite' of their kids. It's kinda sad.

 

[Aspergirl4hire]

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.

 

[Aspergirl4hire]

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.

I'll add one more thing: even if you are totally OK with it, your family and friends may expect you to grieve, and be surprised or critical if you don't. I hope that you find as much acceptance of yourself as you are hoping for your daughter.

 

[Sass]

I agree completely! I had a lot of people say 'oh I'm so sorry' when both my son and I were diagnosed. I just pointed out that it's not actually a tragedy. My son is a great kid, who has different brain wiring and different challenges to allistic kids. Being his mother isn't always easy (especially as I'm autistic myself and share some of his challenges) but then being a mother to anyone isn't easy.

I'd be very wary of ABA too, there's many things that creep me out about traditional ABA, it seems like it's all about training kids to be 'normal'. Imagine being instructed on how to be 'normal' your whole life, and having your own needs and instincts and ways of communicating ignored. I can't even imagine the soul-searching and self-doubt that'd be the result of that in the long run.

 

[Marissa's Mom]

You guys are really opening my eyes to see new perspectives.the diagnosis does help me accept her for who she is and try to understand how she expresses her love and happiness with us. I was worried about potential negative effects of Aba too.

I was really offended when the doctor asked us if our daughter is faking to be sympathetic to others today. I was really bothered that he makes such a statement and doesn't care how that makes us and our daughter feel. I feel like the diagnosis will help us be her advocate rather than being someone who imposes typical behaviors to her.

 

[Sass]

You guys are really opening my eyes to see new perspectives.the diagnosis does help me accept her for who she is and try to understand how she expresses her love and happiness with us. I was worried about potential negative effects of Aba too.

I was really offended when the doctor asked us if our daughter is faking to be sympathetic to others today. I was really bothered that he makes such a statement and doesn't care how that makes us and our daughter feel. I feel like the diagnosis will help us be her advocate rather than being someone who imposes typical behaviors to her.

Yeah, the whole 'lack of empathy' thing, well I personally think it's a load of sh*t, but that's just me LOL

Besides, a 2.5yr old child faking sympathy? What is that doctor thinking?

There are a lot of parent support groups for people who don't want to hurt their autistic kids with harmful ideas and awful language around their neurology, if you want I can ask some of my US friends and see if I can find one for you

 

[Marissa's Mom]

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?

 

[Marissa's Mom]

Yes please sass. That would be very helpful. I really hate it when we have to talk to therapists and doctors in front of our daughter.

 

[Sass]

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?

Absolutely, and it messed me up for years, especially in my teen years, leading to breakdown in my early 20s.

I wasn't diagnosed until last year, and had spent my whole life mimicking what I'd worked out was socially acceptable stuff, and lost all sense of myself.

Had I known earlier that I was different, and known why, and that it was ok to be different, then I think I would have fared a lot better.

 

[Sass]

This FB page is a great resource

Parenting Autistic Children with Love & Acceptance | Facebook

 

[Marissa's Mom]

Thank you. THis reminds me of thinking of whether or not we disclose the dx to anyone other than school teachers. My instinct is telling me not to because there are many people who assume negative things about ppl with autism. Also, we don't know what her prognosis will be. Any advice on that?

 

[Sass]

Thank you. THis reminds me of thinking of whether or not we disclose the dx to anyone other than school teachers. My instinct is telling me not to because there are many people who assume negative things about ppl with autism. Also, we don't know what her prognosis will be. Any advice on that?

That's a very personal decision, and one that might change as the years go by.

I'm very open about being autistic, and will pretty much tell anyone lol. I want to help create a world for my son to live in where the stigma is, if not banished, then at least decreased. But as for my son's neuro-status, I don't tell anyone who doesn't need to know, because that's something he needs to decide as he gets older. The school, our family, and friends know, but other than that, I haven't told anyone.

 

[Sass]

This is a great page too!

Different kinds of normal | Facebook

 

[AsheSkyler]

I wouldn't worry about your daughter much since she seems only a half-step off "normal". Be careful of her sensory issues, but help her learn her limits so she knows how to work with them and not against them. Her diet might expand as she gets older since your tastes do change a bit as you age. Maybe help her learn proper moderation if she starts spending too much time reading and slacks on homework and chores. 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.

She may be a little odd growing up, but so long as you're both honest with each other and neither is afraid of compromise, you should be able to work out any kinks just fine. I can't clean a bathroom because of the nasty chemicals, but I can dust and sweep the floor! =)

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 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.

 

[Thesaurusrex]

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?

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.