when did you know something was up?

Post Reply New Topic

I am curious about why parents got a dx for their AS/ASD kids. I knew quite early something was up (about 16 mo) but didn't get a dx til 2 yrs.

I have talked to some HFA/AS parents that didn't get a dx for their kids till they were 7 or 9.

Did they have sympthoms before school. Or were troubles at school the catalyst? Where they "flying underneath the radar" so to speak?

My daughter had hardly any words til 3 even with intensive interventions, pretty bad tantruming, and was pretty difficult to engage before intervention at 2. She seemed classically autistic but with intervention it looks like the dx will move to AS(very mildly affected)

I am very interested in all the parents' stories; I love all the details. I can't learn enough about these fascinating kids.

My story is naturally a bit different, because in thel ate 1950's Asperger's wasn't a potential diagnosis. By all accounts I did meet the "little professor" picture of AS almost perfectly, but in a family that firmly approved of education, this wasn't seen as a problem. For them, my difference didn't becopme a problem til muy early teenage years, when my lack of socialising became worrying and unacceptable.

When did *I* know that I had a problem? By about six or seven, when it was clear most of the world thought differently to me, to the extent that I couldn't find anyone to talk to about that.
(And if your parents will lie to you about Father Christmas, who can you trust?)

Wow great point! That must have been a burden to a child so young. Thanks so much for sharing. I love this site because of the first hand experience I am privy to.

I kind of knew something was up with my son at 3 y/o, but thought ADHD or something like that. We didn't go for a full dx until age 6, and that was because ds was so emotionally troubled that we just had to figure out what was going on. We took ds to his peditrician and he dx'd ADHD, but he felt something else was going on and recommended a psychologist. When we went to see her, she dx'd AS and we were floored. We had never heard of AS before, and were therefore in shock for a little while. However, knowing dx has been a great help, and we don't regret getting the dx at all.

We didn't get a diagnosis for our son until he was 10 1/2. It was not, however, for lack of trying!

As a small toddler, he had speech problems and was in speech therapy from 2.5 until the end of 2nd grade. He suffered from apraxia.

As he went to Kindie and first we started having problems because he takes up a lot of physical space, swinging his arms and bobbing and weaving as he walks. He also had no concept of personal space. We took him to a neurologist due to his odd gait. He was given a clean bill of health. (I've just recently gotten those reports. On the notes on the side it says "Aspergers?" however it was never said to us, never mentioned in the report to his pediatrician and we were never sent for further investigation. This was three years before he finally got his dx!!)

We (and certainly HE) suffered through getting punished at school for behaviors we now know he had little/no control over. He was put in ISS after dropping the "F" bomb in the cafeteria in 2nd grade. Turns out he has some SID issues and the noise was getting to him.

I finally couldn't take it anymore. I knew that our son didn't have 6 or 7 different problems (he also perseverates - he's been pretty much on trains most of the time) and I was bound and determined to find out what was wrong. So one day last January at lunch at my desk I sat with google and put in his symptoms, 2 by 2. No matter how I put them in, I kept coming up with AS or HFA. Finally I pulled up an article on AS (which I'd never even heard of before that day) and read it. I called my husband, crying my eyes out, to tell him I found our son, the article just described our boy to a tee. We knew he was a smart kid, his teachers knew it too, yet he could barely keep his grades out of the basement. Now we knew why.

It's been less than a year since his "official" diagnosis last April. The psychologist said just after meeting with him for 10 mins she knew, although of course she ran all her tests. We found out his IQ is 130, so yes he has the capacity to learn and do well, in the right environment.

Our son now makes pretty much B's across the board - he is still having problems with getting the grade he can earn in math.

I certainly wish we had known sooner, but am glad we found out when we did. It has helped us to make his days better. The worst part I guess is that it seems that he fails to feel joy. He laughs (that insanely inappropriate too long and too loud laugh) but he isn't a happy person. I suspect that is something brought on by the AS. Unless he simply cannot convey his happiness (although he surely can convey his unhappiness!).

After this journey, when I finally stopped crying and took stock and looked around, a light bulb went off. My husband is sooo on the spectrum. He denies it, but he's got all the markers. Naturally he then claimed I was too, however that's different, I'm just a loner and I LIKE my foods separate and eaten one at a time!! LOL

I didn't really have any behavioral problems which frequently throw up red flags for most folks but I was definitely weird and eccentric. So I more often got labeled with "gifted" or "intelligent" or "creative" than anything else. By my teenage years though, when anxiety, depression, and a bit of rebelliousness crept up on me, I got saddled with Schizophrenia and OCD, then Psychotic NOS, then Narcissistic PD, then Borderline PD, and finally Generalized Anxiety Disorder before AS.

we didn't seek a diagnosis for our son until he was 11. at 11, we were told that he had Social Anxiety Disorder.....he had a Major Depressive episode at the age of 12 which led us to yet again go through testing.this time,( a different dr i might add), claimed that he had Major depressive Disorder and Social Anxiety and that his depression was "masking other stuff". at the age of 13, he had another depressive episode for which he was hospitalized. by this time, we were starting to have a clue that son might be aspie~ the dr's in the hospital however thought we were out of our minds ! they started out by claiming that he was possibly Bipolar or MPD, and ended by saying that he possibly was ODD and an "enigma". After this wretched experience,we decided to actively seek an expert in the field. We took him for extensive testing and he was finally given the diagnosis of Aspergers at the age of 13 1/2.

looking back now, there were definitely signs that he has always had aspie traits~but when your hubby is an aspie ( and you don't know it), you just write things off as being just like his dad.
as an added note, we are looking into getting our 7 year old daughter evaluated as she exhibits many of the traits.

I love reading these stories! What is clear is the personal strength of all of the induviduals involed.
Jsmom Aspiemom1 Ster and Sophist. Thanks for the stories. My daughter's teacher thinks she has ODD and doesnt think she is on the spectrum but definately has "something". I know its HFA by reading many accounts that are similar to my daughter's.

Its great to read you all made it through the shrowd of mystery to arrive at your conclusion.

Ster how did a dx change how you handeled your son's depression. Has a dx improved matters?

people always thought my family were strange, especially my husband. Well he is.
My husband, son and daughter all have AS.
Our daughter had been speaking with a lad on the internet for three years who also has AS, (and is now her boyfriend) he suggested that she could also have it. She did research and found that she does. She is waiting for a dx. Our son definately has it but doesn't want to be dx as he doesn't want to be labeled. And my husband wouldn't benifit from being dx. They all know they have it.

We always thought our son was different in the fact he is very quite, he is also dyslexic, colour blind and has scotopic syndrome. he doesn't speak very often.
Our daughter never stops talking.
They both learnt to talk well and quickly with no problems, she can be very pendantic and I have been told talks with a monotone voice, I can't hear that.
She has always had selective hearing, we have recently learnt this is Auditory processing Disorder.
They all have fixations, I feel that is too strong a word, something that they love too do and talk about, it occupies their minds most of the time.
When the children were small they used to go through stages of doing things, like our daughter went through a stage of Origami, she would leave paper flowers and penguins where ever we went. our son used to measure everything and taught himself GCSe maths. While our daughter read all the factual dog books in the library.
All three are highly intelligent but have no sense of body language, their own or others.
The only behavoiral problems they have is not knowing how to succesfully socialize, my husband is over exuberant, my son talks to people about two/three feet away. and our daughter usually only talks to those who first talk to her. My husband also has temper tantrums, when he gets confused about instructions.
more about my family you will find in my Blogg. http://threeforcompany.blogspot.com/

My son was diagnosed at the age of three. He had no significant language delay, but he was prone to tantrums and destroying his toys. Ironicaly I would often tell my wife, he's just a normal little boy, I was exactly the same at his age. How right I was.

The crisis that led to his diagnosis came when we changed nursery places for him and his sister (twins, she is NT). He could not cope at all. After three days of throwing things around and generally causing havoc, having tantrums, the nursery teachers realised that he was never going to settle in, and we began to realise that this was something that wasn't going to go away. The dx came pretty quickly after that.

As a consequence of learning about AS my wife and I both came to the conclusion that I also have AS, I am trying to get a referal for a diagnosis as we speak.

My son is now in infant school with one to one tuition. He is doing well, and is obviously bright, but making friends and playing with other children is a very big problem for him. He spends most of his playtimes with his personal assistant. This is what he prefers, and I don't see any real reason to force him into something that so obviously upsets him, a playground full of screaming kids. I was the same, but no help was available for me. However, I was much more subdued as a child. My son can get agressive and hurt other children, he has very little empathy as yet. By the way, he and his sister are good friends most of the time, and they often play together really well. I'm sure this will have some long term benefits, but I often feel guilty that his sister has to put up with so much. She is extremely bright and very sociable. It can't be easy for her, because she is often the focus of his tantrums, but seems to forgive and forget very easily.

Igorstop

How do you feel that AS has affected your life? You seem very "together". Is the prognosis the same for your child?

Pinkquinn wrote:

Thanks for that. All I can say is, I don't often feel 'very together.' I have always known there was something amiss. I have had a run of mental health problems, panic and anxiety attacks, OCD symptoms. In fact, I had put myself down as an OCD sufferer until I read more about AS and the fact that many AS people are misdiagnosed having OCD. Although personally I wouldn't call it a misdiagnosis. If you have it, you have it, whatever the root cause.

My sincere hope is that, because of his early diagnosis and the help he is getting, my son won't go on to develope any of the problems I have faced. I don't see how this can be guaranteed, but the child psychologist did encourage us to believe that with support, AS needn't be a big problem for him. The fact that my sons language and itelligence aren't affected mean that the long term outcomes can be good.

By the way, my wife was attracted to me initially (she tells me) because I was 'different from the other guys.' She perhaps got more than she bargained for there. I am finding more and more parents of AS kids who find themselves on the spectrum. Especially fathers, of course.

in some ways, things changed very little , if at all....and in other ways we had to make greater concessions to his needs. we still find ourselves treating him with kid-gloves so to speak ~ careful about what we say, where he goes, who he is hanging out with....we still worry about depressive episodes, but thankfully they are fewer these days. mostly the depression was a direct result of the absolutely horrific bullying he went through at his previous school. not only does he not understand why "people hate me", but he also doesn't have all the necessary social skills to deal with the bullying. he's been getting better socially since he started the new school and we have seen great improvements in his affect. A blessing, really.

I clearly recognized myself in my son when he was about 3, and used to say to my wife that I understand him a lot better than she does. Of course, later my wife has said that it was around that time she realized that something wasn't right.

My parents missed most of the clues with me but claim that I was always different, very unlike my brother and sister. OTOH, this was close to 40 years ago, and there were no aspies, just weird kids with varying degrees of problems...

ster what type of school is he in now?

Odeon what is your son's dx? AS? how old is now? How is he doing.

HA......"weird kids with varying degrees of problems"

I am sooooo glad to know that this is diagnosable now, and that we have therapies. I would rather help my girl out than think that she is just a bad apple who isn't too bright

He's 11, he's an Aspie, and attends an Aspie class consisting of three students and two teachers. It works pretty well, he's a lot more relaxed, and sleeps a little better than he used to. There's hope for him. He wants to be a scientist or an archeologist, and I believe he can do it.

He's still a weird kid, but he's MY weird kid and I'm proud of him.