Question on Autism Adapt/"recover"/Misdiagnosis

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I'm not sure if this is in the right topic, or should be in the Parents forum as it's about my son..But it's a question that has to do with autism in general.

I'm not sure if I can word my question properly....It's a bit long winded but here I go..

Is it really possible to adapt so well to the point where all your autistic tendencies disappear?Or does that mean you just had something else, as a lot say you can't recover from autism. Is it adapting, or is it something entirely different? Or is it the therapies?

My son was diagnosed with "autism" (Just that title) At 26 months old. I'v talked about him here before.

He had all the very strong autism signs, loss of words at 17 months(Bye bye, ball, daddy, hi, waving actions) He lost it all. He never responded to his name, he never looked when called, he never gave eye contact, he never shared, He spaced out A LOT(we thought seizures after i was told it could be one but never found one on eeg.) he didn't point, though i taught him too at 21 months. He started tippy toe walking, hand flapping and spinning at 21 months old. I took him to a private speech therapist and got started on words like "M-""more" etc.

Then he got into the government funded speech therapy at 25 months old and he's been in speech therapy 11 months(IMO the best thing ever for him!)

At 24-26 months my son could read 1-10 and A-z, and Even words like"House" "mouse" and "grandma" he could read(memory) yet he couldnt really recite them, or answer any questions about them. I'm not sure if it's normal development to read that young. I also used flash cards so that may been why?

He went into a development assessment at 26 months old, and had an Ados test(12 score) and they diagnosed him with autism. By then I Even told them, He's been in speech therapy,OT etc he actually will share once in a while, and look at me now, and i have got him to loook at me once or twice. I basically wanted my child to be evaluated then found out, and thought oh no this is wrong etc..Which i figured was a natural reaction after...

We do play therapy every day, or every other day, I got him into preschool (a two hour twice a week sept-to june this month) just to get him involved with other children. I stayed.I am always encouraging speech therapy and play skills in everything I do with him, so we did that while with other children.

Now he just turned 3 two weeks ago. And every week has been an explosion of expressive/spontaneous speech. His therapist is thrilled and shocked on how he's almost at 3 year old level for his speech, asking appropriate questions etc. He still can't respond probably to certain questions. Messes up Are you a boy answer with what's your name Lol. And he still dosnt totally understand certain wording. it has to be said more how we have went over it. He still echos, but he is using his echos appropriately, with "yes" infront of them or Changing you to I. Though he still does a lot *goes by stars* "Be careful linus, you'll fall down." Or "Don't do that it's dangerous" lol, too cute.

Everyone is constantly praising me, saying It's because of all the work I'v done with him..I don't feel I can take credit. I Don't know why, really its all him, that he's improved so very much. His strongest skills is adapting, memory, and requesting. Though he is going into a once a week pragmatics therapy group with few older kids(4-5) because he has his 3 year old level, just not the social aspect/spontaneous sometimes he is very robotic, or sing song, everything being what I taught him but used appropriately. But another issue I think i noticed is, his skills seem set to his mum dad, teacher/therapist. But I don't see them transferring to other children, and sometimes more to adults. A parent at his preschool will talk to him or say hi, and he will completely ignore them(too into everything else?) I try to make him look and pay attention, but when they ask him questions it's like he has no idea what to say. So they were worried about uh.. Generalization I think?

He almost never spins, he almost never flaps his hands, unless really odd occasions.His main stimulation issue? Would be spitting on his body and rubbing it , licking things etc. Ah I hate that one to say the least..for hygiene purposes

He never had an attachment toy, now he does, hats, and spider man mask(which he believes he is spider man XD)

But everyone who meets him tells me "He doesnt seem any different to me" though as they are talking to him he walks right past them..I'v gotten the few "Told you he'd be fine at 3" ..right 11 months of therapy mean nothing..his therapist thought that was typical. And told me she had a lot of children like linus(language disorder) come in at 2 , their parents choose not to do any therapy for whatever reason. Come back at 3 and they are still the same as at 3. And she believes the therapy made a huge difference. (though she is a therapist, so i dunno..no Bias there?)


I see that he still has these few little things that make him different, and I'm told he could have future issues as he gets older with other things, or he may not.

But it's so confusing for me, am I looking to much into my child every issue, maybe he is just fine..

I do believe he still has autism, but can you adapt so well to lose your most sensory issues, learn tons of speech skills, in such a short time?(1 year )

His father I always believed had aspergers before my son was born, but I felt my bf biggest quality is he can adapt really well. He was diagnosed with ADHD as a kid though I Think they were wrong..his issue is lack of care of other subjects, he actually has very intense focus, he is amazing with networking and computers. and now cars, or anything he wants to learn.He actually has something I think my son has. Hyper focus. Where they focus so hard, they literally hear nothing else.

After being together so long I can see it, he realises what he should not say, sometimes he will turn and ask me first. Or question his behavouior. He always told me I was wrong, but even now he himself thinks maybe he truly does have aspergers, or at least recognizes the tendencies. He started asking me, if it normal to be constantly trying to watch the room and act like everyone else? Lol. Social awkwardness is associated with adhd, but I feel his is a lack of understand of how to converse. But now with me he's gotten more social opportunity and he just seems much better. His grandma doesn't agree with me, and says hes just socially unaware/akward because he didn't have many friends etc.

But he's adapted so well, though he still has his issues with anger/sensory(to point where he gets angry)/Assuming people mean one thing(an attack) when they mean others. Though others argue."Nah he's just a mean person." But I don't think so i'v known a lot of mean people, and to me it's just how he misunderstands, and been mistreated all his life for his differences

But..Is it possible, both these guys in my life, just have adapted so well, to point of being "Normal". Or does that mean they don't have autism? Well I know my son is very mildly affected..And when you have him next to 3 year olds, I feel you can see diffence between him and them. But I get bombarded with, "He seems fine to me" Before okay I could be like no he has these issues, and we are working on them , and doing as much as possible for him, but now he really does seem "normal", so I feel ..confused? But i know he still has things he has to work on. I think it's more people upsetting me and doubting..though I'v always been like that.

I know deep down the label isn't what matters, it's the fact that he has that label I'm able to get him so many services. And i need to work on his issues, speech, sensory, behavioural etc. ( as any parent would work on issues) . Who he is how he is,will always be that way, and I'm fine with that, same with his father, but like with his father if he did have aspergers maybe the reason we can't repair some of his issues, because they need to be approached differently, as maybe they are founded from different reasons than the average person..

Either way I'm very lucky on all his progress, and I'm not not wanting all this advancement..I'm just confused on what it means. Did it really help I have had him in therapy for over 1 year? I Didn't even put him in ABA, just my own Play therapy, and speech therapy/OT/ and preschool..

Any insight..at all would..be very much appreciated.

Sorry if this is in the wrong area also sorry for typos/improper grammar!

Thanks again guys~

I'm not a parent, so I can't say from personal experience, but speech therapy definitely helped improve his language. Intensive language development lessons would help any child learn language skills faster. I think, anyway, unless the child has reached their current maximum language potential.

I think a lot of people with autistic children get told, 'but he/she doesn't seem any different', when in fact they do, the people just don't necessarily know what they're looking at it. People also have a tendency to just say 'oh that's just how they are', and then wave it away, at least in my experience.

For instance, as a baby I didn't cry expect when in physical pain, I didn't babble at all, I didn't interact with family members when they attempted to play with me - on my first birthday video I have a lot of unwrapped presents and people are trying to get me to play with them, but I just looked away when they tried to get my attention. I didn't smile much at all as a baby or toddler. When there were loud noises, such as at nursery when there was group singing or noisy play etc, I would put my hands over my ears. I would completely ignore the existence of strangers when they tried to interact with me, and it would take me months before I would acknowledge their presence, let alone interact with them.

But, my mum, with only my hyperactive brother, who had serious behaviour problems, as a reference point assumed that I was just a 'good baby/kid'. Also she put it down to me being biologically female (I'm transgendered, so that became an irrelevant point as I got older). My mother's family assumed the same, and when my cousin was born they put down her behaviour, which was classic of ADHD which she has now been diagnosed with, to her just being a naughty little kid. They assumed that my other cousin was just slow, lazy, and a bit naughty, when in fact he has turned out to have an above average IQ for his age, but is severely dyslexic and the frustration was causing behavioural problems.

Sorry I only have anecdotal evidence, but my point is basically a lot of the time people mostly don't know what they're talking about. Also, the social problems typical of ASD's haven't really had time to 'kick in', especially if your child is more towards the 'high functioning' end of the spectrum, his ability to interact with kids his own age - which at the moment, correct me if I'm wrong, but as a three year old consists mostly of playing next to other children rather than with them - probably hasn't be outstripped by social demands.

You seem like an attentive parent, just keep doing what you're doing.

This might be better suited to the parents section. Regardless, my son developed similar to yours but to compare how he is now at 4 years old to yours mine is probably more affected but still experienced rapid advancements after having lost all language. Autism cannot be cured, those with it can however adapt and not show outward signs. If you haven't already try googling hyperlexia, it sounds like he may have that particular manifestation of autism. And in my experience the therapists are definitely a bit biased towards giving themselves credit for things they had little to nothing to do with.

Many people say that I have adapted to the point I can pass off as normal so yes I would say it is possible.

It's quite posslble and likely that if the autism diagnosis was correct your son is likely to remain with a diagnosis of HFA. I doubt any of his minor differences will be that obvious to anyone else until he is a bit older, when any differences from his peers will become more pronounced.

You sound like you've done really well with your son and you should be very proud of your progress.

Jason.

I know that we can cognitively learn all the skills that NT's just pick up naturally. With early intervention, it is very possible to learn enough to quite successfully pass for NT.

The basic sensitivity issues, and need for solitary time to recharge would remain.

I outgrew autism pretty fast in my childhood. I was labeled with it when I was 2 or 3 but my parents never bought it. I had ear infections and then hearing loss so it effected my development. It could have been a coincidence. But with all the work they did and the therapies I got, I learned a lot and got more normal and by age 8, I was retested and they weren't as prominent. The doctor who tested me said he didn't agree with the early diagnoses and could not see autism in me. Other doctors couldn't see autism in me either. But I got diagnosed with AS when I was 12.

My mother had to use lot of her time with me to teach me and I don't know how she did it with three kids. I've read that parents tend to spend more time with their special needs kids and not pay attention to their other ones because special needs kids take up so much of their time. But she says if she had more, she would have had less time with me and I wouldn't be talking as well. I may not be as good as where I am now. But thanks to me, my brother was an early talker because he was always around when she was teaching me to talk so he picked up on it.


But yet I seemed like a normal baby. I opened my presents at Christmas and on my birthday, I did manipulation and threw tantrums up until I was three years old (mom just told me that), I did teasing, I babbled, I paid attention to people because I played with them and used to wrestle with my dad's friend's kid who was my age and I played ball in the yard at their house, I just seemed like a normal child in the videos. I wonder where is the autism the doctors saw? But the doctor notes and school reports contradict it all because I don't sound so normal after all and not the same person I was in the videos because I don't ever see the problems in them they wrote about.

If this helps, I have AS and was dx'd a few years ago. I'm 48 now. Up until shortly before my dx I had never heard of AS or thought there was anything wrong with me. I thought everyone had the same amount of difficulty that I did and they just pushed themselves harder.

I learned to pretty much pass for NT all the time. It's only at times of great stress, tiredness, being overwhelmed etc that I cannot function like I should.

I still have my tendencies but because I have tried to ignore them and act "normal" for about 36 years now, they have become preferences rather than requirements. There are some sensory things I just can't stand at any time, like the smell of cat pee or the feel of itchy things next to my skin, but then everybody NT or not has things they can't or won't deal with. My NT husband and kids cannot deal with or be around spiders. Not at all. They cannot even kill one with a shoe. It's not a won't for them it's a can't. It doesn't bother me so I'm called to be Spidergirl whenever they see one.

I wouldn't have been able to adapt like I have if I had know about my AS when I was a child. I know how my mind works and I know that if I knew there was something that was causing me to be the way I was, I would have just given up. My mother would also have used the AS to become even more overprotective than she was, and instead of being married for 25 years with kids and a grandbaby, running a household and basically having a nice life, I would still be living at home with my mother, unable or unwilling to speak to strangers, leave the house alone, endure any discomfort or invoncenience, etc.

I don't know if my info there will help you or not, but I thought I would pass it along.

Not a direct answer to your question, but a bit of my autobiography here..
Lost speech at 18 months, regained it at 3 years with complete sentences, etc. But speech was always a bit odd, stiff, etc. Lots of stimming & other autistc behaviors. I had friends, but only if they approached me.
By the time I reached college, a year or two late, but got there! I could reasonably pass for "normal" in casual conversation/interaction. But still regarded as odd.
I did learn to adapt my behavior to seem less frightening to those around me. Only in intenses stress/meltdowns were my difficulties really noticeable. I could pass for NT now, but have issues with relationships/intimacy still. Current age is 50.
Yes, a lot of us lean to adapt or at least ACT like it. But that can be very tiring.

Sincerely,
Matthew
PS. Never was labeled with AS as that did not exist. Some suspected autism. I think my pediatrician may have used Childhood schizophrenia ( an outmoded term).

Olive Oil mom , I understand sometimes the over protective ness ends up doing more damage. My family was very overprotective, and I have a lot of issues with independence now. I actually I guess have my weird things, I can't stand sand pappering, or cotton balls. I use to literally puke at the thought of cotton balls, or seeing one, one time a dentist shoved one in my mouth and i started puking. I also had issues with pickles at a young age.

It's strange how you said about being overwhelmed, and stressed, my son now his only times his spinning/hand flapping/spitting shows up is when he's really tired, or stressed or overwhelmed. Before all his stimulation issues would pop up at night, now it only happens once in a while. Or if the preschool class starts getting really loud he'll have a huge tantrum. Which is weird because he loves gym, but if the kids play activity inside it makes him very confused. Like dancing like a bug /freeze music games lol.

League girl do you believe you have autism?

I'm really not sure of hyperlexia, I have heard of it, but my son can not actually read, he just has really good memory ^^;. I'd think hyperlexia would be actually more intense, than reading 1-10 and a-z right? I mean he's 3 and it hasn't improved his reading, like I'd assume someone with hyperlexia, and his comprehension is coming in. His speech therapist diagnosed him with Language disorder, and said he had higher skills at an older level, yet he didn't have 1 year old skills. But the skills he has are very concert and logical, which could be why he gets it easier.

I guess I was wondering can he still have autism if he is losing his tendencies, though when I look at it, compared to children his age he does still have issues that they do not have.

I was always worried about misdiagnosis, but the diagnosis has been great because its allowed him amazing therapy that I believe has helped him 100% improve his issues.

Speech therapy is such an amazing thing, how much it truly helps, as she stated and I believe he was missing "stepping stones" (he has a language disorder) Once he got them, its like the rest flew together pretty naturally.

My sons speech is stiff, it's just seems like everything that was taught, like robotic and Sing songy, but he is also a kid too. But now as spontaneous speech is coming it seems a little more natural.

Yea the whole parrell play, he is okay with going next to children, he doesn't seek out and play next to them though, they come to him. But lately (been in preschool sept-june) not at preschool, but when i met other families and their kids, he follows them to their rooms, and just yesterday he was talking to them! Was soo nice to see!

I think I just appreciate the speech and social interactions of a child so much more than the average parent lol! I guess though it's because my son never had it, I think it's a beautiful thing~~ I try not to compare my son to children who are "normally" developing, but I try not to think less of him either <3

Thanks matt~ I bet your an amazing man, that's all I want for my son, to grow up to be a great man and have all the opportunities every other child gets. If he wants to go to school, to have the ability to do so (post secondary) He has no choice for other school lol. It's strange that whole. Loss of skills at 16-18 months, then regain of skills. And adapting etc.

It's just way to much of a coincidence how many children/people experience it.
Thanks a lot you guys, Sorry for putting this in the wrong topic you guys

Yeah, I agree about not comparing to "normal". He's not normal, but that's not necessarily a bad thing. It's not even necessarily a disability; at some point, it's possible that he'll learn enough that he's no longer got any impairment--and at that point he'll lose his diagnosis. You couldn't call him "normal" then because he'd still be neurologically atypical, still different; he just wouldn't be impaired, and that would mean you could no longer diagnose him with autism. A diagnosis is only necessary if there's impairment.

There's another problem that often comes up with young autistic kids: The stereotype that autism stays the same throughout the lifetime. In reality, it doesn't. I've never heard of a case in which an autistic person couldn't learn, and I've read about (and occasionally met) autistics who also had profound intellectual disability. In fact, autistic people can learn, though they often learn in an atypical way. Sometimes, "atypical" means faster or slower, sometimes it means dropping a skill only to re-learn it, or being able to hold on to only so many skills at once; sometimes it means seemingly having no progress for a while until you suddenly "get it" and you can do it as though you've been making steady progress all along.

Autistic children learn, and that includes learning coping skills as well as the skills that autism makes it harder for him to learn. And in some areas, we may learn more easily--such as reading and your son. The idea that an autistic child learning to speak is a "miracle" has always annoyed me. It's much too common to be a "miracle". Almost all autistic children will learn to speak; many of the rest will learn dependable alternative communication. There's this aura of urgency and desperation, like "If we don't do something drastic this poor child will be locked away inside himself forever!! !! !!"... Yeah, that's bull. First of all, we're not locked inside anything (and, if hypersensitive, are probably more in touch with the world around us than NTs are). And second of all, you don't need to do anything drastic; you just need to give the kid a good environment, a good education, which is pretty much what you have been doing. Therapy for autism is essentially education--teaching skills, teaching us how to get along in a world that isn't made for autistic people, letting us develop our strengths so that we can use them to contribute to the world at work and in everyday life.

I'm honestly tired of all the drama. Yeah, we're different, but can't the world accept that? Can't we just be everyday autistic people, instead of walking tragedies or miracles or inspirational success stories? Can't we just take our quirks and our disabilities and be part of the world as we are? It's just so frustrating when people assume you can't have a good life unless you magically become normal.

My son can read some pretty big words now and it seemed like it happened overnight, he understands much of what he reads but cannot answer most questions (like "what is your name" - he can manage some yes or no questions now, not always accurately.) When he lost language all he retained where letters and numbers and he could recite the alphabet before he could would say "Mom" (he's in the habit now of calling me by his own name). My son would never sound out words and he had them memorized like you said yours does then with no effort on my part (aside from providing him with lots of educational TV shows) he starting reading all kinds of random things.

Edit: From what I've read Hyperlexic isn't used as an official diagnosis or anything, it's just nice to be able to put a more specific name to what's going on, my son has every symptom listed here: http://www.autismkey.com/hyperlexia/

Last edited by Washi on 11 Jun 2012, 9:01 pm, edited 1 time in total.

To answer your question in short - yes it is possible for people to either suppress or fully relieve themselves of AS symptoms. But I believe like volcanoes, that only makes the AS go dormant, and there are various things that could trigger it to explode or come out in full force all over again. This will lead to a person having to re-adapt. A full cycle.

Yeah. It's better to interact with the world on your own terms. You have to take into account how your own brain works best--instead of faking normal, you should be figuring out how you do things best. Aim for competence, independence; for useful skills--not for normalcy. There are a good many autistic people who are severely limited in their abilities solely because they have been forced to reject any strategy that doesn't seem "normal". It's like forcing a left-handed person to write with their right hand, and then wondering why they aren't any good at writing with either hand.

I'm not sure if my boyfriend is pretending, really he tries his hardest but he is trying his hardest to be kind, listen to others not interrupt and not be curt. Mainly being quiet, instead of talking and explaining every detail.

But he usually hates social interactions, especially with meeting people first time(friends etc he's fine with as he is himself) But in social situations it makes him feel extremely awkward, so it usually makes him angry afterwards

My son is too young i'd assume to hide any type of traits, I just think they are fading?

Sometimes and sometimes I wonder if I was misdiagnosed. No doubt I have traits of it. I still get my moments. Stress makes it worse.