Devastated - please help!

Post Reply New Topic

I am a NT mother of an almost 6 yo boy (will turn 6 in September) who was diagnosed with AS in May. This was a dx whose accuracy I question even after 3 months, though most of the times I am convinced it is correct. That is when I feel devastated. I am here to kindly ask posters on this forum to help me with their opinions on whether this truly sounds like an AS case or not. Yes, I know I cannot get a second opinion here, we are in the process of getting one from a really good specialist - but any info you may be able to offer given the context I will provide - will be highly appreciated.

I am married to what I've always thought was a perfectly normal man (and wonderful in so many ways, minus his relatively poor communication skills) and I also have a 3 yo clearly NT daughter.
It took me a while to process the news that my son has AS because I never really knew anything about ASD-s other than the Rainman stereotype. My son had always been SO FAR from that stereotype that I simply never bothered to inform myself about such things.

He started out in life with the "Social King" nickname, if that even begins to make sense! He reached all milestones in time, talked early, has always been very verbal (perfectly bilingual), very warm and responsive, and has always been highly interested in interaction with us, the adults in his life Talkative, responsive, demanding constant interaction, big mouth, looking at faces - but all this mainly around adults, not necessarily kids. I should specify that our living situations over the past 5 years were never conducive to regular play with kids. We just didn't have them around and it was pretty hard for me to constantly arrange play dates. So he has comparatively less experience playing freely with age peers, in an unstructured environment.
He seemed just fine though at BDay parties, occasional playdates, etc.

Up until the age of 4, we never had any reasons to suspect even the slightest connection with an ASD. Later we started noticing some very vague quirks (such as preferring to wander on his own when in social situations with age peers) - but we would have never attributed such things to anything other than just being a child. Looking back I also remember him liking to tie strings on things or playing with stuffed animals in very repetitive ways such as squeezing the animal with affection and making squealy noises at them. I attributed this to my tendency to be very affectionate with him and never spare tons of kisses - which he later started to do to some stuffed animal he was turning into a complete rag from so much squeezing.

Last year he started developing an intense interest in dinosaurs. He ended up frustrating his preschool teacher one time. She then told me that he crossed his arms and turned his back when asked to fall in line and just get engaged in whatever activity was planned for the group. I asked her what she thought I should to about such behavior and she said "why don't you ask the ped". I did - and she referred us for an evaluation "just to exclude anything and make sure he starts K on a good note" (her words).

So this is how we ended up in a psychologist's office. We were convinced she was just going to send us home and tell us the old-fashioned "he's just a kid, he will be fine". Instead she delivered the devastating news that he has AS.
When he was administered the cognitive test as part of the evaluation, he scored in the superior range (95%) on the verbal section and average (45-50%) on the spatial-visual section. He scored poorly on a test assessing capacity to focus and stay "on task". I should also maybe mention that he is academically advanced for his grade level (has not started K yet but he reads, can write some full sentences, and solves simple additions and subtractions, etc) but this is mainly because I have worked with him and not because of some burning desire to teach himself those things.

The psychologist concluded that "he is very smart" (whatever that means), that he has AS, and that "the future is open" - when we asked about his possible life outcomes. We simply ended up feeling frustrated because we still couldn't understand the truth about our son mainly because he seems so normal, in so many different ways.

As any parents, we would surely love to hear that this dx may have somehow been incorrect.
However, we are NOT parents in denial, chasing after what WE want to hear. We both have completed graduate degrees (PhD level) and now fully understand all intricate aspects of this condition. After virtually having reached "the end of the Internet" and the library reading about the condition, we realize that our son does have some (if not many) AS-like traits, in certain situations; but we are still not 100% sure that this was a correct diagnosis. At the "gut feeling" level, we feel that such traits may also be due to other conditions (ADHD, sensory integration disorder) or just simply his personality.

He CAN connect (but he is often into himself). He CAN converse back and forth (but he often prefers to talk about his own interests). He CAN make inferences and see a "big picture". He CAN lie. HE does have empathy. HE does understand embarrassing or uncomfortable social situations. HE does make faces with a wide range of nuance. He IS flexible with routines (such as taking a different road, etc).

Overall, I just don't see significant enough differences in overall presentation between him and NT kids, with the exception that he often prefers to wander off on his own and be very self-driven (as opposed to a social imitator or pack leader; he's none of these two). At the same time, he does indeed have many AS-like traits, including a good dose of social naivete and lack of "knack" or astuteness in this department; frequent (every few days or so) meltdowns when he is told "no" to something he wants to have or something exciting he thought was going to happen soon (such as going to the park) and suddenly can no longer happen (it's raining). In those moments he starts whining severely or crying and keeps on going regardless of efforts to bring him around or embarrassing himself in front of other people.

As I said before, around the age of 4 I noticed he preferred to wander off on his own when taken to play dates, instead of becoming part of the action. But how could I have seen this as a sign of "pathology" when I myself have ALWAYS been that way?

At that time, I was just sure he took after me in that respect. I never had more than one close friend at any one time in childhood and have NEVER been part of a larger group; by the time the group reached 3 in size, I started to feel uncomfortable because I didn't know how to make my way in it and shine, be heard or be taken into account.
I did connect incredibly well with my one close friend and I ended up being extremely versed in reading/studying people and social interaction in general. I still despise large groups/crowds though I learned to function in them with a "fake it until you make it" kind of approach. I am no longer intimidated by them; I just tend to despise them because all I detect in such large group interaction is sheer superficiality. That happens to me even when the people in said large group are all PhD-s (my profession often places me in this type of circles). I have also always done EXTREMELY well in job interviews to the point where I never had an interview without being offered the job (WITHOUT having a stellar CV, comparatively speaking).
I had to conclude that in no way did my son inherit this from me or my side of the family - as they are all extremely socially versed people, with tons of friends (a few very close, and tons not so close) and an incredible ability to joggle social events and situations.

After doing my AS homework, I finally understood that a few members of my husband's family have AS written all over them, including my husband's visibly quirky brother: nerdy, shy, introverted, very poor communicator, never known to have been in a relationship of any sort, straight or gay. Also, my husband's father was characterized as very morose, hard-to-please man who "never liked people" and never liked to go anywhere.
My husband's niece is a very talkative woman with a vacant gaze, who could go on and on about herself for 200 years in a row without ever thinking to ask YOU a question about yourself or stop listening to what YOU might have to say too.
I've always thought she was just plain narcissistic.

At first I was almost convinced that the psychologist's dx was wrong or just an exaggeration; now with every day I see more and more traits in my son that are textbook description of what AS is - and I literally feel devastated. I have been extremely depressed over the past few weeks when I began to learn what the life outcomes of such children are likely to be.

Then, I end up torturing myself with questions like how is it even possible for a child who appears so normal, is so aware and so smart in so many ways, to have such a bleak future? Is he really doomed to a life of misery because he fails to be socially astute at the age of 6? Will he never the learn how to navigate the social scene? To have a life partner?
Because if this is true, the darn thing really IS very bleak. While I never cared about having "tons of friends" (and NEVER had them), I did always care tremendously about finding a partner: having that ONE someone with whom I can share my life.
If I knew my son will never be able to have that, I would surely be devastated.

My questions would be: do you think his is a clear case? If so, how badly is this thing likely to get as he enters elementary school?
Thank you so much.

It seems by the tone of your letter that you feel horrified that your child might possibly have AS. The thing is, he's not going to change into some monster simply because a convenient Dx label was generated. He will be the same child he always has been, the Dx is only to put certain behaviours into context, it's not predictive of future behaviour.

Frankly, I think you need some family counseling for the emotional issues surrounding this diagnosis, as much as you need information about AS. You can hurt your son much worse with your emotional reaction to him having AS, more so than AS affecting him in the first place. So I really think you could take the chance to speak to a counselor.

Yes it sounds like AS, sounds very much like my son as a matter of fact. Your difficulty proceesing the Dx is common and understandable. It can be painful to hear that your child has a condition that cannot be cured. The future is far from bleak though. Your son sounds like he has many characteristics that will serve him well. You have discovered his condition early which means you can start putting in place beneficial interventions. Once you have grieved, you need to start focusing on what you can do to help him.

The diagnosis is almost always horrible. Let yourself grieve and take time to work through it.

Your son does not have a bleak future. It sounds likes he has many super attributes and is a great little kiddo. He is so little still! If his language and comprehension skills are there, you guys will be able to work through all those growing up aches and pains. He will find his way. It may be a different way than the other kids, but he will get there.

You'll find yourself wishing you had not worried so much. As a parent, its hard NOT to worry. But when he is older you will look back and see that there was nothing to worry about. You will find a way to help him bridge the gaps, and celebrate his strengths.

This is the hard part for you. But you will find your way through it, like the rest have. Give yourself some time. Find some support. You will be happy again!

First, smile. Second, (((hugs))). No matter what the second opinion is, everything will work out for the best. You are a mom who obviously cares for the welfare of her son. If you did not, you wouldn't be here asking and it would not upset you as it has. As I say to my daughter when she starts to worry, "It will be OK." She hates it when I say that, and I am imagining you may be giving me an eye roll too. That's ok.

I am just going to say (not my opinion, but just saying it for the sake of my discussion) that he has AS. Okay. That's good. You have found out when he is young. The first huge hurdle is over. There are things available to help him through whatever difficult stages there are. There are groups to learn social skills. There are counseling and parenting strategies to handle anger or anxiety issues. There are also groups that can advocate for you and your son if it is ever needed.

You see, up until about three years ago, I was one of those horror stories you probably have read about. My childhood was pretty typical for an undiagnosed Aspie. I was bullied, I was told I was too smart to do [fill in the blank].. I was told I was too dumb to do [fill in the blank]. My mom was told that there was nothing wrong with me. She blamed herself. Without getting into more, just trust me when I say that it was not fun and I wouldn't wish it on my worst enemy. I finally hit rock bottom when my second relationship failed. I could not understand what I did. I was depressed, suicidal and angry. It took a lot of searching within myself to realize that I am not who I was showing everyone. I was better than what I was, and I needed to change myself, by myself.

It took three years to get where I am now, and a diagnosis of AS as well. I am in a good place and am very happy with who I am. I am in the process of getting custody of my children (I did not loose them, I handed them over in the divorce agreement) and I am working on my degree. Yes, I am almost 38, and by the time I graduate I will most likely be 42 (I love that number!) but the way I look at it, it is far better to be 42 with a degree than 42 without one. It did take me too long, and I do still struggle. I think the biggest difference with me now is that I accept who and what I am. I am me, and I am on the autistic spectrum. I only wish that this was officially being diagnosed when I was a child. My mom had me tested, and they came back (in 4th grade) that I had mild ADHD. At that point in time, since I did not have a low IQ, I was just pushed along and labeled lazy.

I think the difference now is that the children are actually being helped. My oldest daughter (who also has AS) has so much more help than I ever did. She has friends (but she is still working on some of that), she is bright and she is doing her best. I am envious of her and children like your son who have been identified as being unique. This is not a negative characteristic. It is just a different one. People with AS just have a different way of thinking and viewing the world.

I will leave you with a couple thoughts (And I think in movies, so I will show you some of my favorite clips):

[youtube]http://www.youtube.com/watch?v=OV_CcmLlaw4[/youtube]

and

[youtube]http://www.youtube.com/watch?v=kyprxFLr-Ms[/youtube]

Also, here are some well known people who either are on or are suspected to be on the spectrum.

[youtube]http://www.youtube.com/watch?v=RTA5ov3YjbM[/youtube]

Finally, just because someone is on the spectrum does not mean that they will never be able to have a partner or be a parent. It is true that relationships can be more difficult, but people are learning to understand and accept it more than they used to. We still have a long way to go, but we are heading in the right direction. I am a mom of three beautiful girls. They think I am the greatest thing in the world, and trust me, after the rejection I faced as a child, it is wonderful to have someone think you are so great. It is not always easy. As with most parents, they will try me, but at the end of the night, I am their mom and they are the best thing that has ever happened to me... just like you are to your son.

And for the record, the second relationship that failed? We are back together as best friends. We may never be "partners" again (but it is not out of the question), but we are closer now than ever before. And I just told him today that I had AS. He accepted it, and me, with open arms. Your son is not doomed to have a terrible life. I promise.


(((hugs again)))

It's autism. It's not the end of the world.

My sister has AS and went to a very poor small town elementry, middle and high school and graduated from Yale and is 1 year away from a law degree.
She has traveled the world and has been given many distictictive awards, she just got married to a really great guy and her future is bright.

Dont let the diagnosis fool you into thinking that people with AS are low achievers, bill gates has AS, michalngelo had AS, Einstien, Edison, some of the best minds in computer technology are Aspie minds, Jamie Hyman of mythbusters confessed having AS, the list goes on and on of the influencial people who shaped human history who have AS

It sounds like your son is very high functioning which actually has a better life prognosis than an NT for some because very high functioing Aspies often are high achievers.

It is important for him to suceed that you focus in on his gifts and interests and support him with his differences but dont regard AS as a debilitating disability but a difference...he needs to hear that from you.

He sounds like a great kid, his future is bright with the right support.

Jojo

As a person with AS, I don't understand why you would be devastated, unless you had a false impression of what AS is, or hoped to live vicariously socially through your son.

AS should not be thought of as a disability. It should simply be respected that people with AS are different, and have different needs, different strengths, and different weaknesses than others. When given the right environment, many people with AS go on to become doctors, lawyers, scientists, philosophers, entrepreneurs and so on. To be honest with you, the biggest obstacle a person with AS faces is an over protective parent who underestimates them and does not properly understand their potential.

If your son does have AS, here is the area he likely needs your assistance in and should be taught explicitly.

1. Knowing what other people expect of him socially.
2. Making friends.
3. Engaging with those his age.
4. Understanding non-verbal rules of social engagement.
5. Pragmatism.

Things you need to be aware of:

1. Children with AS often have hypersensitivity and when they say something bothers them, this should be understood as being unbearable to them.

2. Children with AS often have transition issues. Transitioning from one mundane thing to the next can prove stressful, but you have to make them do it anyway.

3. A child with AS may occasionally say something offensive when it was not meant to be so. Consider he may have been misunderstood before reprimanding him

4. Children with AS tend to get stressed in situations that others don't, and may not be stressed at all in situations that others might break down in.

5. Children with AS still need to be disciplined and taught manners, just like all children.

6 Children with AS may not respond positively to traditional discipline techniques, and you should consult with other parents of children with AS, or people with AS on this matter.

7. Children with AS should not be kept from social opportunities as a form of punishment.

8. Children with AS stress easily in certain social situations and generally need a lot of alone time.

9. Children with AS should be in some organized group type activity (4H, scouts, etc) and the parents need to be closely involved with this to help the child socially.

10. Children with AS may need to be encouraged a little more to try new things.


That's all I can think of at the moment.

Your son sounds wonderful and he is so lucky to have a mother who care so much for him. Having support is the most important part to him being successful in life.

GL

Your case sounds a lot like mine. My daughter also achieved every development level by the book. She also never had problems communicating with adults, only with kids. I thought it was because she was only child and we had no friends. That was not the reason. Having AS is not the end of the world. And apparently your child has mild AS, like my daughter. She is 11 now, she's being on therapy for 3 years now and she is doing great. I do recommend you to get a good therapist to help with socialization, confrontational issues, handle frustration, etc. He just need a little help with things that are difficult for him to handle. Besides that he is a perfectly normal, healthy child. You have nothing to worry or feel scared about. Actually AS can be a very good thing. Their pros are really great

I am so confused about this: in some places I read that ASD-s are "devastating illnesses", yet in others that "it is not the end of the world". How come? Which one is true - because they can't both be.

And is AS really that much better than Autism, is it something on the spectrum or is it a separate thing?
I did read an enormous amount of info so far but I learned that even experts don't agree on what it actually is.

I have days when I look at my son and he seems and act like the most normal child normality has ever produced: very perceptive, receptive and smart on top of that. Then a meltdown comes; or a social situation with peers where he just chooses to focus on some toy or wander off on his own. Up until a few months ago, before the dx, he wasn't quite like that: he did make a friend in pre-school, he did report that he was playing tag with more kids at preschool, but he also reported in the beginning that one of the alpha-kids told him "he can't play tag". Then it got better and those reports went away. When I watched him around those few alpha-kids at preschool they did not show any signs of "bullying" towards him. Once I asked one of the alpha kids something about baseball, and he said that a,b,c and my son are the best players (my son can barely catch a ball, let alone play baseball!). But the point was that the alpha-kid seemed very nice and positive about my son.
My son also played very well on some play-dates with the kids of my best friend. He especially likes hide-and seek.

I forgot to mention that I am a NATURALIZED US citizen, born and raised in Eastern Europe (stayed there until the age of 24) and have always had SOME challenges with acculturation despite being married to a born and raised American man.
By no means do I hold my original culture to be "superior" (it is NOT, it's got lots of problems of its own!) but I could not help noticing many problems with the American culture too, in a "reverse of the medal" kind of way.

Soon after having children, I realized I HATE toys. I had an uneasy feeling about them way before I found out about my son's AS, because I would notice that on playdates, ALL children, not just mine, seemed to gravitate towards some separate toy instead of actually playing WITH each other.
Even the poorest of American kids have way too many toys, let alone those who live in middle to upper middle class households (talk about an invitation to ADHD and sensory overload). I would watch them how they obsess over various toys instead of just cooperating, playing TOGETHER, making exchanges, putting together a dialogue, making up games together, imagining scenarios together. I blamed it on the highly individualistic culture of the US and I used to think that most American children (and adults too) acted autistic-ish: self-absorbed, self-driven, randomly running around on the playground without trying to get to know some other kids there, etc.

Comparatively, I grew up completely without toys. Books, pens and paper became my toys later on.
At 8 I was writing original long fairy-tales or drawing my hand off; not because I was a genius but because there was nothing else to do (no TV either). Until the age of 7, I just had two boy playmates and we were playing like crazy without ONE single toy. Under the communist regime you just didn't have those - period. I remember zero toys and those boys didn't have any either. But we were playing like nuts inventing games together. I would have preferred to starve to death than be separated from them.

More recently though I realized that my boy's traits go above and beyond the possible individualistic influences of the US culture he was born into and that it is NOT the American cultural environment that "caused" him to turn out this way.
I just know that the highly individualistic environment of the US will not necessarily "help" but rather deepen his tendencies to self-absorption - because many people in the US tend to be self-absorbed, AS or not.

I still don't know what to do to make him control his meltdowns when he doesn't get something he wants a lot. Yesterday he went to a neighbor's house and wanted to leave with one of that child's toys. I said "no, you can't do that" - and he kicked off the tantrum (sudden tragic crying). I asked him later whether he realizes that he embarrasses himself in front of those people and he said "I can't help it".
However, he IS perfectly capable of understanding social embarrassment: I once told him to go dance with his sister when we were at an outdoor pizza place where music played, and he said" "no, I don't want to do that, look at those kids, I will feel embarrassed in front of them if I do so".

So...you can feel embarrassed about dance but you don't feel embarrassed about a tantrum?

You can connect with me when we have long, deep discussions and plenty of dialogue at night, when I put you to bed, but you can't connect with an age peer?

You can pay attention and you have the ears of a cheetah hunting its prey when I whisper something in private to your dad (something I don't necessarily want you to hear) but you can't focus on other things, acting distracted, absent-minded and unfocused most of the times (when situations don't involve something you're very self-driven to?)

You can look me in the eye but you can't look at other people when they are trying to engage you at first?

I just don't understand how all these realities can co-exist.

PS: Sorry about the typos, fixed them.

Last edited by goodolddays on 03 Jul 2011, 6:52 am, edited 1 time in total.

a strange reality it is, but it is actually decently 'typical', even though it's weird putting that word to AS.
of all the ASD friends i have, most indeed were the ones that had to be stopped socialising with everyone untill the age of 5-6, where the NTs were still silent, usually still learning to talk, before turning into themselves and reversing the situation.

the 'you are smart, but it doesn't show becouse you dont pay attention' is almost a definition, i always had better knowledge then my parents and teachers about things i shouldn't even know existed, yet my schoolwork hovered just above 'retardation' level...

the super hearing is something very recognisable for me personally; it is like i focus on soft sounds as a protection mechanism ("how'd that get there", "is it dangerous", "did i miss something?"), while normal things just dont mtter that much; i already know or just dont care.

the eye-contact is a real weird thing, but it has to do with trust; the eye is a window to the soul, and it's very painful for someone on the spectrum to have their soul seen; it's one of the few private areas we have left, so we only let those we fully trust inside; those being the father and/or mother, possibly a sibling, and our significant other; should we be able to get one.
all others feel like they are judging us and our intentions (what they usually are; eye-contact is evolutionary a method to see if the person you met is going to attack you or not), and that is painful to us.

My son has Autism and can't talk - I wouldn't call that 'devastating' so I don't think a child that tells you he is embarrased to dance with his sister in public has a 'devastating illness' either (sorry but that strikes me as funny).
It is great that you know this early, as he is young, and you can learn from people on this site and other places how to help him with things that are - and importantly will be a challenge for him. Forewarned is forearmed. Your boy sounds a very cool and clever kid to me.

But why is the dx so horrible if the reality is not at all bleak?

Yes, I have read many arguments that AS kids who also happen to have relatively high IQ-s may end up with even better life outcomes than NT-s, on average. If relatively high IQ AS individuals end up in grad schools, in complex professions and make reliable, trustworthy, loyal partners...how come there is so much misery and pain surrounding this dx?
More than the "Einstein/dutiful spouse and father" syndrome I hear about the "non-functional" syndrome: people living on meager disability benefits, barely functional from so much failure, bullying and put down in their childhoods, continuing to torture their parents as young adults, or their spouses, if they are unbelievably lucky to get one...until the whole thing ends in divorce (?????).

I can't help but wonder which path is my son more likely to take?
Or is the "Einstein-type" story just wishful thinking on the part of the AS community, and in reality those people DID NOT have this condition?

The psychologist (and parts of the IQ test) said that "he is very smart" (it is not me saying this as I know it sounds coming from a mother). I am just reproducing what she said. I myself used to think that; ...but after receiving this dx and starting to notice his social inept-ness at work, I often catch myself sinning and thinking ... (please don't shoot me!) that he is in fact "dumb" because he can't catch on, pay attention, has delayed reaction to commands, can't watch for his turn in board games because of getting distracted and needs constant reminders to make his move, etc.

He IS incredibly easily distracted, fidgets a lot, loses EVERYTHING he touches and has ADHD written all over him (unless it is something he is 100% self-driven into, like dinosaurs or building with Legos). The psychologist did not want to apply an ADHD dx yet because she said it was too early; but she did write in her report that he is likely to develop attention problems in the future.

Trouble is that finding out about this dx now makes me identify and recognize all the AS traits in him and compels me to want to correct them at every step - because he DOES exhibit them at every step. It is the most stressful thing I have been through in my entire life.

Finally, ilka: does your daughter get therapy via public school or do you have a private therapist?

The video of the blond young lady is quite amazing: it is beyond belief that someone dx-ed with autism (which for many is accompanied by mental retardation) can speak, communicate and express herself so eloquently, in addition to NOT having that vacant, superficial, "whateevaaah" look that I see in many NT girls her age.

But what if this girl didn't have autism and now, that she is obviously doing so well - she says she does?
What if she had something else? She just comes off to eloquent to have an actual "disability".

Thank you again for your kind and encouraging post.

Oh honey, I don't know what you have been reading but autism doesn't equate to mental retardation. There definitely are people on the very low functioning end of the spectrum but your son doesn't sound like he is anywhere near that end of the spectrum. I read in your posts a lot of over generalizations. For example, you wonder about kids pre-school age each playing with separate toys. This is perfectly normal developmental stage. Kids ages 3-6 often parallel play. At around 4 some kids have more interactive play but even NT kids may not really do this much until 5.

You just can't generalize about autism. The oft quoted phrase appears appropriate here - when you've met one autistic person, you've met one autistic person. Your son will have his own unique successes and challenges. It will take time for you to understand those things which he can control and those he can't. I highly recommend you read a book written by a member here, Tracker, (sorry if someone already posted this) http://asdstuff.com/grats.html and Tony Attwood's Complete Guide to Asperger's. Tracker's book will give you insight from an Aspie point of view and Tony Attwood will give you a more clinical point of view but one that is directed at the lay-person so it is very understandable.

Beware of stereotypes and generalizations. You'll have an easier time understanding this situation if you keep your mind open and focus on your son in particular not autism in general.