Every time I'm CONVINCED he has Asperger's he improves

Post Reply New Topic

And this is why he's alsmost four and I haven't done testing yet. I'm not cancelling appointments and I know it's actually good news that his delays do finally come, but it's frustrating to constantly be second guessing myself.

Since he was about 2 years old I've been going, "Hmmm...." and as SOON as I get ready to call for a diagnoses/testing, he starts the very thing I was worried about.

Now, he's almost 4 and a huge majority of his speech has been TV lines, but JUST when I make the calls and set up appts, he has started talking for real. He's always been very verbal, but now he's doing a bit back and forth talk. Also, in the past two weeks he's tried about 10 new foods which is another big turn around with other issues he has.

He is such a mystery and I know it's good that he's improving, but me always doubt if I should pursue testing or not - like I don't want some expert to look at me like I'm an idiot for thinking he has a problem!

My son was diagnosed a couple of weeks ago, and at the meeting to discuss the assessment findings it was mentioned that he will go through periods when everything seems fine and we'll wonder what all the fuss was about. We were told that this was normal, and all kids go through different periods of skills and emotional development, at their own pace and in their own time.

I've seen other parents here mentioning the same thing. Sometimes your child will seem fine, and it may be that they've just got the hang of something, or have matured into a certain behaviour. What you then have to be aware of is the next challenge!

I would say that if you have any concerns then you should seek an assessment. If the professionals are any good at all they will know that children go through different phases, and they will be looking for information about his early life right up to the present day. They won't only be looking at his current behaviours.

I'd also add, that as I only have the one child, what I assumed to be "normal" behaviour wasn't seen as such by the assessment team. But then, "normal" varies from individual to individual, and from family to family.

it's very common to go through periods of improvement, and periods of regression...

I think if you get the assessment you will feel a lot better and will be able to stop second guessing yourself. As the others said, phases of vast improvement are normal even if your child is on the spectrum.

Your son may be so mildly affected that he can control his autistic symptoms. However, just because he seems normal at times, it doesn't mean he doesn't have AS. As others have mentioned, our children will have good days and bad days, that is normal. But consider that as parents, we get used to their quirks and what we see as normal, a professional may see as a red flag. Another thing to consider is that the symptoms usually worsen when the child is stressed by social interactions and their environment. Your son might seem ok at home, where he has some control over his environment but may worsen when he starts school.

Getting a diagnosis and therapy is like putting money in a retirement account. The sooner you start, the greater the benefit.

Like you we delayed, hoping he'd mature, emphasizing the good days and ignoring the bad. We delayed until he got expelled from his second pre-school. He's getting help now but he's going to be a grade or two behind his peers because we have to play catch-up.

My son is the same way. Just when I think he is going to never get something, he does it like he's been doing it forever. He does things when he's ready, and that sounds like your child. Mine went from saying nothing at all at 3 years old, to a 20 word vocabulary in literally 2 weeks, 50 within a couple of months. There are some days that I think he isn't autistic, and other days where I am convinced that he is. You will go through this all the time.

Autism, in any form is a developmental disorder. Developmental being the operative word. My son is way advanced in areas considered advanced, and way behind in basics. It all depends on the neurology. With intervention he's moving right along. Slower than most in some areas, faster in others.

I would get him tested just so you can know incase you need to start intervention, learn what it is you are or aren't dealing with and have direction in whatever way the assessment takes you. He may not have AS, but may have NVLD, ADHD only, or something entirely different. IMO, it's best to know. Then at least you can make an informed decision on how to proceed.

Good Luck!

Thanks everyone... There is NO WAY I'm canceling appointments. I've been waiting since Nov. for Child Find and will probably have to wait 6 months for the testing appts for diagnosis (I've only been on that waiting list for a week). I just don't want to go there and feel stupid. I'm super glad he is conversing more, but if I were to sit him with 20 other nearly 4 year olds, he would be the one 'off' for sure. Better doesn't mean, normal range. But it's nice to see progress and I'm happy, HAPPY to see we've rarely seen regression so far at least.

You've gotten good replies, but I had to reply, too, because I could have written the opposite, "Every time I convince myself maybe he is NT and I have put him through millions of therapies and supports for nothing, he displays something blatantly Aspie and I remember that it's real."

I think moms have this gut instinct that we often ignore...or allow others to silence. With my own son, I saw things from the age of 1yo that made me go "hmm..." However everyone (inlcuding a developmental specialist when my son was 20mo) tried to tell me that what I saw wasn't significant enough for diagnosis.

My own little guy is really high-functioning. At times I have thought, "have I overreacted and put him through too much intervention when it wasn't needed?" But when I read what adults on the high-functioning end of the spectrum have to say, I set those fears aside. Kids are immature, and they all act silly to some extent, so behaviors don't stand out as much when they are little. But 8 yo NTs can pick differences out like hawks and make the lives of kids on the spectrum miserable. I think that even if your child is very high functioning it's best to know what's going on now and help him puzzle throught the intricate, unwritten social laws NOW...and start some self awareness so he knows how to navigate that world when the time comes.

One piece of advice before you go for your appt: Make a list of everything that has ever made you go "hmmm..." even if it isn't a concern right now, and even if in your mind that behavior has nothing to do with AS. Bring it with you to the appt. and show it to the dr. Someone gave me that advice and although it was somewhat hard to do, it was really helpful in making the diagnosis.

We've just had DS diagnosed with Mild-Mod Autism...

Throughout the assessment I felt that he had changed and was a different kid and that there's no way he was on the spectrum.. I almost cancelled! Even having teachers tell me that they didn't believe he was on the spectrum.. His fabulous behaviour lasted a few weeks, and was soon back to his old tricks again:)... Well at home anyways ! !!

Even though we have the final dx.... i STILL have days where I dont believe he is on the spectrum! Yet obviously he is if a child psych who's had 35 years exp with ASD has made the dx.

I feel I need more knowledge, and I'll keep on reading until I'm an expert on the subject, maybe then I may feel more confident about the dx...

Good luck, I know just how you're feeling atm. x

I think one of the key things to get your head round is that when people/parents are first learning about Asperger's Syndrome, they think in terms of it being a disability, because that's how it's labelled, it's a disability. But oftentimes, it's not necessarily a disability in the sense of a complete inability to do something forever more, it's more like a developmental delay. Aspies aren't equipped with the innate abilities of NTs in relation to things like reading facial expression and body language and empathy, all those non-verbal communications, but those skills can often be learned.

To my mind, to use computing analogies, I think of it as like an Aspie child not coming with the software pre-loaded, but if left to their own devices, they can learn by a process of 'fuzzy logic', or alternatively they can be 'programmed' through interventions.

http://en.wikipedia.org/wiki/Fuzzy_logic

So instead of knowing exactly what to do, Aspies may often learn through a process of elimination and correction. They learn through trial and error. If they do something and are told off or receive a bad reaction, they store this information in their minds, so perhaps next time they encounter a similar situation, they'll try something different, think of it like Goldilocks and three bears, she finds some porridge that's too hot, then too cold, and keeps trying till she finds some porridge that's just right. Many children learn in this way, but with Aspie children I think it's more extreme because they don't come equipped with the same foundations for learning that NT children do. NT children have a headstart in this way, but Aspies can often catch up.

To give you a more personal example (and by the way, I don't actually advocate this, I'm just relaying what happened to me), as a child, I was growing up in the 1970s and was undiagnosed. I had a problem with eye contact. Because I was undiagnosed, this failing to gain and maintain eye contact was taken by my father to be disobedience and naughtiness. "Look at me when I'm talking to you!" was a constantly yelled refrain in our household, and if I failed to look at my father when he was talking to me, I was often beaten (I ended up in care as a teenager due to physical abuse). What happened as a result of being forced through pain of physical punishment was that I ended up with a kind of Pavlovian reaction, if my father or other people were talking to me, I would end up staring at them, fearing punishment if I failed. I overcompensated. And then as a teenager in high school, if other girls were talking I would stare, and then I was bullied a bit due to my staring also being equally inappropriate, they would ask "What are you staring at? Who are you looking at?" so then I adjusted my eye contact so that I wasn't staring so much and arrived at a happy-ish medium, I think.

This is one of the reasons why I present as an atypical Aspie, because I can now do eye contact. As a child, I would have met that particular part of the diagnostic criteria, but through fuzzy logic, 'I must look at people when they're talking to me' or else I'll get beaten by my father, to over-correcting 'oops! but I mustn't look too much or else I'll get battered in the playground for staring at the hard girls' so my behaviour was inadvertently modified without me knowing or realising at the time what process I was going through.

Oh, how I wish that instead of beatings someone had just explained those rules about eye contact to me!

I mean, if you think about it logically if it was purely a dis-ability or an in-ability to do something, what would be the point in interventions? There would be no point whatsoever. There's a point to some interventions though because it's not a disability or inability, but a developmental delay.

One word of warning though, don't set your expectations too high in terms of behaviour, because even when you think something has been mastered, everything can be undone in a split second in the event of a meltdown. Aspies can be reasoned with, can understand logic, so I think you need to maintain a constant narrative about why you're doing things, what your expectations are. Feeling bewildered and not understanding what's going on and why can still lead to frustrations and meltdowns. The switch just flips and logic can go out of the window and only be regained when they're calm and/or have had a bit of a time out. Trying to deal with the underlying issue or problem in the middle of a meltdown will be counter-productive. You just need to manage them, come up with some coping strategies like a safe place to calm down for a time out. And then review the situation and talk about later. Some things can only be learned in hindsight, through trial and error.

I think the Super Nanny television programme is excellent in terms of showing parents some strategies for instilling and maintaining discipline without physical abuse. You don't have to batter your child into submission as my father did with me.

^^^ I'm so sorry you had to deal with an abusive father. That's truly terrible for any child.

We don't use physical punishments and I have to admit, my son has probably never been 'truly' punished as he's so darn GOOD with behavior. Once in awhile I have to raise my voice to "You know I mean it." and once in awhile I have to deal with little flare-ups, but for the most part, he just likes to please me and does as I say or, if when he does something good, I gush unbelievably and he loves that and learns the best that way.

Now when he was two to three we had TERRIBLE fits with screaming and flailing, but he learned that those didn't work, so he gave up, but not as easily as most kids do... Oooo boy was he a handful then.

I am beginning to realize that he's delayed, but it does come with time and patience and lots of positive reinforcement. I'm really beginning to feel more positive about all of this.

Hi, I had to smile when you stated that your son improves then you wonder if he has something or not. I did that with my first child. Him being a first child, I didn't really know what was normal. Sometimes his behaviour was way over the top and other times just a little odd (still can't understand why his grade 2 teacher thought licking the carpet was really strange )
Anyway, I took him to the doctor and he threw a huge tantrum so he gave us a referral to a paediatrician. My son was a perfect child at his appointment so of course there was nothing wrong with him (I knew that- sort of). A few years passed and his swimming teacher and school teachers told me to have him checked. I had him checked again and this time he was diagnosed with ADHD and put on medication (it didn't help).
We stopped the medication (anyway my son did not seem to fit this diagnosis!).
A few years passed and we managed along until in fifth grade the learning support teacher told me she thought he had Aspergers (what's that?).
I made an appointment with a clinical psychologist who did the whisq (not sure how it's spelt) test on him. She didn't think he was Aspie (meanwhile he was rolling around on her floor rubbing his head and back against the door like a horse), but she said she would do a verbal questioning on him.
Well, lo and behold, at the end of it she thought he certainly could be Aspie and gave me a refferal to the leading specialist in Australia.
To make a long story shorter the specialist kept laughing at the things my son did and said "congratulations, your son has Aspergers". At last!! !! !! !
As you can see from your son, Aspergers is not a disabilty, but rather a different way of seeing and doing things. Yes, sometimes they need to be guided socially but think of people who are not Aspie and who do things which may be accepted socially but are WRONG!!
From the time my son was aged 1 to 10, I constantly wondered if there was something different or if it was just a phase. It was actually the people around me who kept telling me my son was 'different' that finally made me realise he is.
I'm darn glad he is too!!

All the time. Right now, I am at the "period of denial" where I honestly believe he doesn't have it. He seems so similar compared to his peers - but still Nate. In a few weeks, I will be saying "I see it again". I don't know if I will ever get through this rollercoaster ride of denial that occurs during periods of improvement

I'm feeling exactly the same right now! We've been on a great ride lately with huge improvement. Only minor things remind me that yes I guess he does have mild Autism!.... Sometimes

This was really good to read.

We're going through a huge regression at the moment and i'm calling to get an evaluation, she had been going through a really good part before all this and i thought what we were doing at home was helping... until she tried to eat some broken glass.

Its so funny I keep reading and I know my son has aspergers, Hes has just been dianosed with ADHD and OCD, but i disagree. I always say he is my uniqe child And I am so greatful I love his personality hes great ,everything is so literal, you have to say what you mean. Since he has these diagnosis what do I do now? He is 5 and in kindergarden the teacher keep asking me if he is taking medication,( he is not) and really I just dont want the teachers to be upset or get mad at him because of things he cant control. Where do I go from here?