Parent of a child who may have Aspergers, advice please

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EmmaP
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21 May 2013, 3:23 pm

thank you all for the helpful responses. UDG I was told two more lessons, two lessons ago. I went to the appointment thinking it was the final one to have Aspergers raised at the end of the appointment. I was not given any indication as to why she believed he had it and, in all honesty, I was quite shocked when she brought it up and didn't think to ask.

I wouldn't think our bad eye contact (my sibling and I) would be an autism indicator. It would more likely be due to the fact that my mum used to talk to us from a separate room throughout our childhood as she was doing things and after a while we didn't feel the need to look up when replying! Once we got into the habit we didn't realise. Once it was pointed out to me my eye contact improved greatly.

The therapist didn't feel that an official assessment was required as Sam has no issues at school. He doesn't need any support during class and has no problems with his school work, behaviour etc. She did indicate that his teacher had concerns during yard time (i.e. that he seemed to favor playing with one particular boy a lot) however his teacher has never raised this with us.

The waiting list for ASD assessments on the HSE in Ireland is completely crazy. It can be a year and a half before you can get an initial appointment to see an autism team. The other option will be to pay privately (anything for 400-800 for the initial assessment) which considering the economic climate at the moment will burn a big hole in our finances. However, as I said I will do whatever I have to.

I think the first step will be to make an appointment with his doctor (after speaking to his teacher to find out what she is saying to the therapist!) and see where he thinks we should go from here.



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21 May 2013, 3:26 pm

Tori0326 wrote:
I'm pretty much in the opposite position of you, where my 5 year old is going to speech therapy and I do suspect my son has Aspergers (as I do) and I'm not certain if I should share my belief with his speech therapist because it could lead to them suggesting he get officially diagnosed and subsequently labeled as being special needs. I'm not sure that's in my son's best interest. I'm also not sure how easy it is to diagnose in very young children. It's hard to say what are normal oddities that they will grow out of and what behavior will persist, like the eye contact, poor social skills, hypersensitivity, etc.

I'm also convinced that it is a hereditary condition as it's pretty clear my father and his mother both had undiagnosed Aspergers as well.

There's nothing wrong with someone being labelled as "special needs" if they actually have special needs, in fact it is overwhelmingly a good thing as it means they will get the support they need. If they don't need any support, then they won't get it.

It is partially hereditary. It can't be fully explained by genetics though.



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21 May 2013, 5:29 pm

I am now even more sceptical about the therapist and her motives. To raise something like this, without warning, any real information and at the end of what was meant to be the last session seems to me to be very unprofessional. She will be aware of the long waiting lists, and my suspicion is that she is trying to put doubts in your head so that you continue to pay her. I'm in Scotland, so am used to accessing services on the NHS so am perhaps more suspicious about private therapists with their financial motives.

From what you say, your son has no problems at home, or at school. The thing about playing mostly with one particular child seems to be something and nothing to me. That's not unusual for 5 year olds.

My advice, which you may take or leave, would be to take what the therapist has said with a large pinch of salt. Arrange to go and speak to the school and ask them if they have any concerns about your son. It would be interesting to find out exactly what was said to the therapist, and how that particular conversation went - was she picking out anything which she could present to you as a problem?

My son was diagnosed with Aspergers, after a 15 month wait. It was the school who first raised the concerns with me about my son's behaviour which led to his diagnosis. They suspected Asperger's but didn't say so as it's not their place or role to do that. He was almost 6 years old then. When he was about 3, his nursery had also raised concerns and had suggested that he might benefit from seeing a speech and language therapist. When he was referred for an autism assessment I was initially shocked - that possibility hadn't occurred to me. However, as soon as I started reading about Asperger's I recognised it, very much, in my son. My son is an only child, and I had noticed that in some ways, many ways actually, he was very different from his peers.

The big difference, that I see, between our experiences is that the pieces all very quickly fell into place for me, and Asperger's made sense. For you, and your son, that doesn't seem to be happening.

One option for you might be to see if he could be placed on that long waiting list, while you adopt a "wait and see" approach. That way, if any problems do begin to emerge, you will already be in the system.

Do schools in Ireland have Educational Psychologists? If so, you could see if that person could see your child or work with the teachers in assessing whether there are any real problems.



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21 May 2013, 5:59 pm

The_Walrus wrote:
Tori0326 wrote:
I'm pretty much in the opposite position of you, where my 5 year old is going to speech therapy and I do suspect my son has Aspergers (as I do) and I'm not certain if I should share my belief with his speech therapist because it could lead to them suggesting he get officially diagnosed and subsequently labeled as being special needs. I'm not sure that's in my son's best interest.

There's nothing wrong with someone being labelled as "special needs" if they actually have special needs, in fact it is overwhelmingly a good thing as it means they will get the support they need. If they don't need any support, then they won't get it.


I agree whole-heartedly. It wasn't until my son was FINALLY put on an IEP and into a special-ed class in 8th grade that his world started opening up for him. All of a sudden it was recognized that indeed he was not the perpetrator in the bullying incidents, and he was not a bad kid, and he was not a problem causer, and so on.

The school librarian literally hated him (and he felt the same way toward her because of how she treated him) but when he was finally put into the IEP class all of a sudden the librarian loved him. I hold no love for her because what she did was completely wrong but I firmly stand behind a child being "labeled" if he/she needs help, has trouble, etc. The only way these kids are going to get the help these days is if they're "labeled".

And here it's against the law (I believe) for them to reveal his "label" to students and other parents and whatnot so truly being "labeled" can really make a difference in some cases.

He's now 19 and has absolutely no life skills and is expected to live with me forever and I truly believe it's because they missed the autism until he was 12 at which point he was diagnosed with Asperger's so he didn't get the intensive help he needed even though he was speech delayed and had in-home services from a premier Autistic group in California until he was 3 (how could they have missed it?)... In all my research I know he should have been diagnosed with Autism then.

I am currently working at getting him re-diagnosed with Autism - the state (we're in Washington now - moved here sight unseen from California to get him help) won't help him with an Asperger's diagnosis but they all agree (the state and his counselor) that he should have been diagnosed with Autism not Asperger's, and with the diagnosis of Autism they'll step in and help him. He's been assessed by the state to see if he can work and it's been determined that he'll never be able to hold a job without long-term support.

Labels may have been bad at one time but now they're almost a necessity to get your child the help he or she needs.

OP, best of luck with it all! :)


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21 May 2013, 8:15 pm

EmmaP wrote:
thank you all for the helpful responses. UDG I was told two more lessons, two lessons ago. I went to the appointment thinking it was the final one to have Aspergers raised at the end of the appointment. I was not given any indication as to why she believed he had it and, in all honesty, I was quite shocked when she brought it up and didn't think to ask.

I wouldn't think our bad eye contact (my sibling and I) would be an autism indicator. It would more likely be due to the fact that my mum used to talk to us from a separate room throughout our childhood as she was doing things and after a while we didn't feel the need to look up when replying! Once we got into the habit we didn't realise. Once it was pointed out to me my eye contact improved greatly.

The therapist didn't feel that an official assessment was required as Sam has no issues at school. He doesn't need any support during class and has no problems with his school work, behaviour etc. She did indicate that his teacher had concerns during yard time (i.e. that he seemed to favor playing with one particular boy a lot) however his teacher has never raised this with us.

The waiting list for ASD assessments on the HSE in Ireland is completely crazy. It can be a year and a half before you can get an initial appointment to see an autism team. The other option will be to pay privately (anything for 400-800 for the initial assessment) which considering the economic climate at the moment will burn a big hole in our finances. However, as I said I will do whatever I have to.

I think the first step will be to make an appointment with his doctor (after speaking to his teacher to find out what she is saying to the therapist!) and see where he thinks we should go from here.


Heres what I think, continue the speech thearpy if he still has speech issues in your opinion, if his school and home life is just fine then even if he is AS there should be no need to rush to be assesed, take the year and a half wait. I'm not convinced Sam has as however i'm not convinced otherwise either. When I was in senior kindergarden they tryed to move me up a grade becouse they thought I was advanced and bored or whatever they thought, thats what AS looked liked to them at age 5. The next year or two will likely be very telling weather he has it or not.



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21 May 2013, 10:23 pm

rapidroy wrote:
EmmaP wrote:
thank you all for the helpful responses. UDG I was told two more lessons, two lessons ago. I went to the appointment thinking it was the final one to have Aspergers raised at the end of the appointment. I was not given any indication as to why she believed he had it and, in all honesty, I was quite shocked when she brought it up and didn't think to ask.

I wouldn't think our bad eye contact (my sibling and I) would be an autism indicator. It would more likely be due to the fact that my mum used to talk to us from a separate room throughout our childhood as she was doing things and after a while we didn't feel the need to look up when replying! Once we got into the habit we didn't realise. Once it was pointed out to me my eye contact improved greatly.

The therapist didn't feel that an official assessment was required as Sam has no issues at school. He doesn't need any support during class and has no problems with his school work, behaviour etc. She did indicate that his teacher had concerns during yard time (i.e. that he seemed to favor playing with one particular boy a lot) however his teacher has never raised this with us.

The waiting list for ASD assessments on the HSE in Ireland is completely crazy. It can be a year and a half before you can get an initial appointment to see an autism team. The other option will be to pay privately (anything for 400-800 for the initial assessment) which considering the economic climate at the moment will burn a big hole in our finances. However, as I said I will do whatever I have to.

I think the first step will be to make an appointment with his doctor (after speaking to his teacher to find out what she is saying to the therapist!) and see where he thinks we should go from here.


Heres what I think, continue the speech thearpy if he still has speech issues in your opinion, if his school and home life is just fine then even if he is AS there should be no need to rush to be assesed, take the year and a half wait. I'm not convinced Sam has as however i'm not convinced otherwise either. When I was in senior kindergarden they tryed to move me up a grade becouse they thought I was advanced and bored or whatever they thought, thats what AS looked liked to them at age 5. The next year or two will likely be very telling weather he has it or not.


I agree. The older he gets the more obvious it'll become if he does have AS. If he does have it, I know this is a ways off but when it's time for middle school be prepared because that is when all "h e double hockey sticks" ;) breaks loose. Transitioning from class to class is a terrible experience for many of them; transition in general is terribly difficult on many.

Things got bad for my son starting literally the first day of Kindergarten (transitioning from home to school but I didn't know that then that it was the transition that was the problem) and he ended up having to meet with the psychologist at school (a psychologist that was contracted with the school) every single week for his entire elementary school years. It would have continued into middle school but they didn't contract with anyone so we had to start paying cash so he could see the same guy.

But at any rate, after Christmas/Winter break (two weeks off) in Kindergarten when I picked him up after his first day back, his Kindergarten teacher said to me "You must have done something very terrible to him during break because his behavior is so bad right now". I lived with tremendous guilt for 7 years about that trying to figure out what I had done to him.

It wasn't until he was finally diagnosed at 12 and I started researching (which I do literally every day since he was diagnosed almost 8 years ago) that I realized that I hadn't done anything to him, it was the transition from school to home for two weeks and then back to school after that two weeks.

So chances are, if your child has AS then one place you'll see it is when there are transitions. Some can handle smaller transitions but not bigger ones. My son wasn't able to handle any transition. I learned by trial and error (he still wasn't diagnosed so I had no idea what it was that he was struggling with) that I had to keep his days after school and on the weekends very rigid if you will. Dinner was always at the same time. There was always a bath on Sunday evening no matter how many baths he had taken the day before (he used to "swim" in the bathtub). Story time was always at the same time and almost always "I hate green eggs and ham". ;) If I did everything exactly the same every day he did much better. I didn't know why, I just knew that it helped.

Here's hoping your son doesn't have it but if he does all it means is life is going to be different than what you had planned. Look at the world through his eyes and "enter his world" rather than expecting him to "enter your world", and advocate advocate advocate for him and you'll both do great. :)

And always trust your gut. You know your child better than anyone else does, even better than the doctors do. :)


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22 May 2013, 11:05 am

I agree with the last two posters here: let it go for now---do not obsess and do not fall into a diagnostic pit, especially if your child is in general doing okay.. Wait a year and see what happens. Though I can understand their concern, lot of people on this forum are kind of obsessed with diagnostics. Your kid is doing okay now and will probably continue to be doing okay.



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22 May 2013, 11:34 am

Remember that having only one or two friends and spending all your recess time with them is not actually a problem--it's simply a personality trait associated with introversion. Introverts will have deeper relationships with a smaller number of people, and be just as happy as the social butterflies who know everyone casually. Introversion is not harmful to anyone, and has its benefits; don't worry about anything related to introversion. If you yourself are an extrovert you may not realize that an introvert can be just as happy spending more time alone, with small groups, on personal hobbies, and in quiet pursuits as an extrovert would be if allowed to meet everyone, do high-energy activities, and hardly ever be alone--in fact, it's probably unreasonably stressful to expect an introvert to do as much socializing as feels natural for an extrovert.

It's common for autistic people to be introverted--most of us are, though autistic extroverts exist and are not too rare. Sometimes, even the professionals will mix those things up and assume that the desire to be alone, to do quiet things, to stay with familiar situations and familiar friends, is pathological rather than a facet of that person's personality. Even outright eccentricity is not something that needs to be treated--only when there is real impairment, not just differences, does a child need a diagnosis.

Many of us here are adamant that children with those impairments get evaluations, appropriate diagnoses, and information on why they are different. Many of us grew up without that, and we thought we were rude, stupid losers. However, we had real problems related to our autism, things that may have kept us from excelling at school, made us easy targets for abuse and bullying, forced us to endure painful sensory stimuli that no one believed were painful for us, and kept us from communicating effectively with those around us. If there are no problems of this sort, and no indication that they are in the child's future, then there is no reason to get an evaluation or diagnosis no matter how quirky the child is. Yeah, autistic people are quirky--but non-autistics and non-disabled NTs with autistic traits can be quirky, too. And that's okay. Kids aren't meant to be carbon copies of some archetypal child.


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22 May 2013, 1:24 pm

Callista wrote:
Remember that having only one or two friends and spending all your recess time with them is not actually a problem--it's simply a personality trait associated with introversion. Introverts will have deeper relationships with a smaller number of people, and be just as happy as the social butterflies who know everyone casually. Introversion is not harmful to anyone, and has its benefits; don't worry about anything related to introversion. If you yourself are an extrovert you may not realize that an introvert can be just as happy spending more time alone, with small groups, on personal hobbies, and in quiet pursuits as an extrovert would be if allowed to meet everyone, do high-energy activities, and hardly ever be alone--in fact, it's probably unreasonably stressful to expect an introvert to do as much socializing as feels natural for an extrovert.

It's common for autistic people to be introverted--most of us are, though autistic extroverts exist and are not too rare. Sometimes, even the professionals will mix those things up and assume that the desire to be alone, to do quiet things, to stay with familiar situations and familiar friends, is pathological rather than a facet of that person's personality. Even outright eccentricity is not something that needs to be treated--only when there is real impairment, not just differences, does a child need a diagnosis.

Many of us here are adamant that children with those impairments get evaluations, appropriate diagnoses, and information on why they are different. Many of us grew up without that, and we thought we were rude, stupid losers. However, we had real problems related to our autism, things that may have kept us from excelling at school, made us easy targets for abuse and bullying, forced us to endure painful sensory stimuli that no one believed were painful for us, and kept us from communicating effectively with those around us. If there are no problems of this sort, and no indication that they are in the child's future, then there is no reason to get an evaluation or diagnosis no matter how quirky the child is.Yeah, autistic people are quirky--but non-autistics and non-disabled NTs with autistic traits can be quirky, too. And that's okay. Kids aren't meant to be carbon copies of some archetypal child.


I agree with this. Your child spending all his free time with one other child is not a cause for concern. Some kids are more introverted. In fact it might show some good attributes in him: loyalty and the ability to maintain a friendship such as it is in kindergarten terms. If your son is not having problems that are interfering with his functioning or are really distressing to him then he's fine.



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22 May 2013, 3:03 pm

DianeDennis wrote:
The_Walrus wrote:
Tori0326 wrote:
I'm pretty much in the opposite position of you, where my 5 year old is going to speech therapy and I do suspect my son has Aspergers (as I do) and I'm not certain if I should share my belief with his speech therapist because it could lead to them suggesting he get officially diagnosed and subsequently labeled as being special needs. I'm not sure that's in my son's best interest.

There's nothing wrong with someone being labelled as "special needs" if they actually have special needs, in fact it is overwhelmingly a good thing as it means they will get the support they need. If they don't need any support, then they won't get it.


I agree whole-heartedly. It wasn't until my son was FINALLY put on an IEP and into a special-ed class in 8th grade that his world started opening up for him. All of a sudden it was recognized that indeed he was not the perpetrator in the bullying incidents, and he was not a bad kid, and he was not a problem causer, and so on.

The school librarian literally hated him (and he felt the same way toward her because of how she treated him) but when he was finally put into the IEP class all of a sudden the librarian loved him. I hold no love for her because what she did was completely wrong but I firmly stand behind a child being "labeled" if he/she needs help, has trouble, etc. The only way these kids are going to get the help these days is if they're "labeled".

And here it's against the law (I believe) for them to reveal his "label" to students and other parents and whatnot so truly being "labeled" can really make a difference in some cases.

He's now 19 and has absolutely no life skills and is expected to live with me forever and I truly believe it's because they missed the autism until he was 12 at which point he was diagnosed with Asperger's so he didn't get the intensive help he needed even though he was speech delayed and had in-home services from a premier Autistic group in California until he was 3 (how could they have missed it?)... In all my research I know he should have been diagnosed with Autism then.

I am currently working at getting him re-diagnosed with Autism - the state (we're in Washington now - moved here sight unseen from California to get him help) won't help him with an Asperger's diagnosis but they all agree (the state and his counselor) that he should have been diagnosed with Autism not Asperger's, and with the diagnosis of Autism they'll step in and help him. He's been assessed by the state to see if he can work and it's been determined that he'll never be able to hold a job without long-term support.

Labels may have been bad at one time but now they're almost a necessity to get your child the help he or she needs.

OP, best of luck with it all! :)


I really think deciding to seek an official diagnosis is dependent upon the particular child and what help they may or may not need. It's one thing if an individual can't function on their own, but I really resist myself or my child being labeled, just because we're wired differently. My 5 year old is smarter than his 10 year old NT cousin. That's not "special needs" in my book. I'm sorry he doesn't always behave within the parameters of what society deems "normal". That's why I won't be sending him to public school. What they should do is teach people to not be ignorant instead of trying to make us act like NTs.



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22 May 2013, 4:31 pm

Quote:
I really think deciding to seek an official diagnosis is dependent upon the particular child and what help they may or may not need. It's one thing if an individual can't function on their own, but I really resist myself or my child being labeled, just because we're wired differently. My 5 year old is smarter than his 10 year old NT cousin. That's not "special needs" in my book. I'm sorry he doesn't always behave within the parameters of what society deems "normal". That's why I won't be sending him to public school. What they should do is teach people to not be ignorant instead of trying to make us act like NTs.
Yes. At the same time, he does need to learn how to communicate with NTs. If school can't provide the education he needs (and if he's as academically adept as a ten-year-old at the age of five, he's highly gifted and it probably can't)--then it makes a lot of sense to teach him at home. But, if it turns out that he has more trouble learning to communicate than most children do, extra lessons in communication and in understanding the neurotypicals around him would be useful. Similarly, in terms of behavior, he'll need to learn how people see each other's behavior, how to interpret theirs, and how to communicate with them by his own behavior. It's okay to be eccentric; in fact, I think it's a strength because the unique perspective adds to the total possible new ideas available to the world.

Very, very smart people can still have impairments. Disabled people can be very smart. An intensely academically talented person still deserves to have help for the things he has problems learning; a disabled person still deserves to have the chance to develop his strengths.

I was a gifted child and I was always told, "You're too smart to--" and then some autistic trait appended, as though "smart" was a single quantity that applied to everything. It was assumed that I would obviously know how to do things that I found very hard, because other people found those things easy. You'll note how often I say "academically talented" rather than "intelligent"; that's intentional. Not everybody is good at the same things, and not everybody who is good at learning one thing will be good at learning some other thing. Most people's skills are scattered pretty close to the average, but some people are so good at some things and so far behind in others that a standard education is completely inappropriate for them no matter how much you speed it up or slow it down. Whether a child is autistic, gifted, eccentric, twice-exceptional, or any other combination, sometimes an individualized education is the only way they are going to get what they need to reach their potential.


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23 May 2013, 6:12 am

I have today sent off a four page email to the therapist setting out my views and opinions and we will see how things go from there. I think until I have a chat with his GP i will be stressing and worrying about it. We have found ourselves watching Sam like a hawk and analyzing his every move. Trips to the playground still have Sam easily joining groups of kids for games and the end of school still sees Sam and his two class buddies bringing up the rear, bags dragging on the floor jostling each other and joking around (and usually covered in mud) which alleviates my thoughts for a moment and then he may not automatically say hello to the cashier in the local shop and my mind goes crazy.

I did ask Sam about yard time at school and he found it amusing that his teacher thought he only played with one person. We will be meeting with his teacher before the end of term and will speak to her about it, i'm not very happy that she has not previously brought any of this to our attention and, in my view, we as parents should have been her first port of call not his speech therapist if she did have any concerns about him during break!

Again thank you all so much for your advice and words. It really is helpful to me especially as you are people who have been through this first hand.



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23 May 2013, 8:10 am

Consider finding a new therapist. It is HARD to find a good mental health professional. If you don't think she's putting the time and effort to deserve $100+ a week, don't bother with her. Your therapist should be very emotionally invested in your son. She should be throwing new ideas out there if you don't agree with her. There's a reason your husband didn't trust her. 10 years ago, when I was about 13, I started seeing a therapist. She was okay. She seemed to care, but she was unable to help me. I've been seeing someone else since then, and he has changed my life dramatically.

IMO, the disciplines of psychiatry and psychology are going through a very chaotic time. People are writing books about their new theories before anyone has bothered to debate whether or not they're true. You won't know if you are seeing a bad therapist, but you will know IMMEDIATELY. if he is able to help your son.



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23 May 2013, 9:23 am

Callista wrote:
Remember that having only one or two friends and spending all your recess time with them is not actually a problem--it's simply a personality trait associated with introversion. Introverts will have deeper relationships with a smaller number of people, and be just as happy as the social butterflies who know everyone casually. Introversion is not harmful to anyone, and has its benefits; don't worry about anything related to introversion. If you yourself are an extrovert you may not realize that an introvert can be just as happy spending more time alone, with small groups, on personal hobbies, and in quiet pursuits as an extrovert would be if allowed to meet everyone, do high-energy activities, and hardly ever be alone--in fact, it's probably unreasonably stressful to expect an introvert to do as much socializing as feels natural for an extrovert.

It's common for autistic people to be introverted--most of us are, though autistic extroverts exist and are not too rare. Sometimes, even the professionals will mix those things up and assume that the desire to be alone, to do quiet things, to stay with familiar situations and familiar friends, is pathological rather than a facet of that person's personality. Even outright eccentricity is not something that needs to be treated--only when there is real impairment, not just differences, does a child need a diagnosis.

Someone who only has a few friends might be introverted (not a problem) or they might be unsuccessful at making as many friends as they would like (possibly a problem). It depends on whether the child is happy.

Even a happy child who has one or no friends should probably be encouraged to try making a couple more. Friends provide all kinds of benefits which aren't immediately obvious if you've never had any, and only having one friend means you've got all your eggs in one basket. If it doesn't work and the child is ultimately content, then fine, leave them be.



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24 May 2013, 1:01 pm

I wished I had been diagnosed at his age. My mum took me to a psychologist when I was 3 but NOT because of suspected autism, delayed speech or anything like that, I was just throwing constant temper tantrums and she suspected something was off but the psychologist said I was perfectly normal and 10 more years would go before my diagnosis.

But other than that I was a over emotional kid, my aspergers never really "showed" until I hit puperty and the socialisation became way to difficult. I got a depression, anxiety, panic attacks and missed a lot of school.

I'm in no way implying that your son is autistic, I would just personally have wished that my AS was discovered sooner so I would've avoided all that. So just because he doesn't seem very autistic right now, doesn't mean he's not. So keep an eye on him.