Devastated - please help!

Post Reply New Topic

I understand that an unexpected DX can be a difficult thing to process, but I would caution you not to catastrophize or generalize.

First of all, a diagnosis on the autism spectrum is completely separate from a diagnosis of cognitive disability. While it is possible for the two to be concurrent, one of the specific markers for Asperger's syndrome is that the patient has either normal or above average cognitive ability. Sometimes, people diagnosed with cognitive disability/autism (nothing wrong with having a cognitive disability) were actually struggling with communication or sensory issues, and in fact their cognitive abilities were fine, just hidden - see this video: http://www.ctv.ca/CTVNews/Health/201011 ... og-101128/ Second, although there are certain markers diagnosticians look for, each child is an individual and has their own personal version of PDD. Part of the challenge of parenting a child on the spectrum is figuring out exactly what that specific child needs. However, even when parents fail miserably, kids on the spectrum can grow into fantastic adults; many posters I respect here did not have good childhoods, and yet are competent, articulate adults. You can make the road a little easier by learning how to help your child - and, most importantly, learning not to blame him when things don't go as you expect.

Now, I'm going to make a few generalizations: see if these fit for your son. Often, kids on the spectrum are rules-bound - they crave order, predictability, and stability; they don't want to misbehave, but they have a very rigid, literal (and sometimes completely inaccurate) way of interpreting what goes on around them. Eventually, when this system falls apart (which is inevitable; the world does not behave in an absolutely predictable manner) they become overwhelmed and have what is called a "meltdown." This looks like a tantrum, and quacks like a tantrum - but it isn't a tantrum: a tantrum is just for show and will stop instantly when someone gives in to the child. It's effectively more like a computer crash: their brain just can't handle the situation and is overcome.

Kids can eventually learn to manage both their expectations and their emotions, but for a kid on the spectrum it takes a lot of slow, consistent, patient help for them to do so. They need to be carefully taught to watch for situations that may cause them to melt down and to find ways to protect themselves. They need information broken down into very small step-by-step instructions. There are many gifted people who are trained to help parents learn parenting strategies that work with an autistic child instead of against them; I've found that reading books, reading this forum, asking questions and participating actively in my son's therapy have been immensely helpful for all of us.

Many of the people who posted in this thread (I'd like to include myself, but I don't have a formal diagnosis) and who post all over these boards are on the autism spectrum. We're all trying to tell you from the INSIDE: despite what daytime television would have you think, autism is not a crisis, but something you and your son can manage - and it may well turn out to be an asset.

The diagnosis can be very hard. For me, it was a time of great depression, confusion, mourning. Let yourself go through the process. There will come a day when you will look back on this time and understand that you had to go through the process but that, as others have said here, the prognosis is not bad. Yes, people with AS struggle with their differences, but they also shine for their differences as well. Many here believe it's just a different way of being and everyone has their own strengths and weaknesses. It is just a matter, as with a lot of people with AS, that their particular strengths and weaknesses can be profound. I encourage you to keep posting here and learning-the people here can help you work through this process.

I think having a child with low functioning autism can be very hard on a family but Asperger's Syndrome is entirely different and if a child with Asperger's Syndrome proves to be a burden on a family, the problem is the family and not the child, in the sense that all of the innate and learned child raising skills are NT oriented, and children with AS require different sets of skills and different environments than NT children to thrive.



This is a topic of debate. There have been talks of doing away with AS in the DSM-IV and classifying it under Autistic Spectrum Disorder. Those who support this do so because they argue that the diagnostic criteria for AS is too widely applied, and AS, after all, is almost identical to HFA. However those against this who claim AS is a separate thing, do so on the grounds that people with AS have no clinically significant language delays, while people with Autistic Spectrum Disorder do, and this fact alone strongly suggests profound neurological differences. They also cite studies brain imaging studies with have found clinically significant differences between the brains of those diagnosed as having AS and those diagnosed with having High Functioning Autism (an Autistic Spectrum Disorder).



I prefer the description given by Hans Asperger.



Children with AS are not entirely devoid of social skills or the desire to socialize with others, they just have difficulty initiating friendships...knowing when others want to be their friend, knowing when others don't want to be their friend, knowing how to navigate negative social situations, and they need a lot of alone time. You need to tell him if other children consider him a friend or want to be his friend.



And it has become more self absorbed! When I was a kid, the neighborhood children would run around playing games outside such as hide and seek, ghost in the graveyard, jail, or tag, however as I got older I would see less and less children outside, even though I knew many children lived on the street. Part of this was probably due to the fact that parents didn't feel it was safe to let their children run around the neighborhood but I do believe there has been a shift in cultural dynamics as well.



Children with AS can be incredibly inquisitive. Your son would probably actually prefer educational books and science kits he can build things with to toys.

You should get him a Radio kit at Radioshack. He'd probably enjoy that.



I think it's difficult to say. When I was a child, there were many children in my class (before they moved me) and many children at my school, I went to camp and I was involved in activities which should have given me the opportunity to socialize, yet I rarely made any friends, and in fact, probably had less friends than most people with AS here did when they were kids.

This is why you as a parent need to serve as an intermediary to help him socialize.



You need to explain to him the reason. "You can't take the toy because it isn't yours. It doesn't belong to you. Would you want one of your friends to take your toys?" Then you might tell him that if he's good, maybe he can get a toy like that. He might have a tantrum anyway, but the important thing is, you get him to think about how he would feel if a friend wanted to take one of his toys. Maybe he will suggest a novel idea such as the concept of borrowing it.



The other children are not capable of conversing on his level (which is usually an adult level). Most children with AS can converse easily with adults, just not with other children. The other children are not advanced enough.



This isn't unusual for children. However children with AS learn better on their own because they usually have some processing issues or don't understand the logic behind what they are being taught by others. When they learn on their own they are pursuing their own interests and are able to learn about those interests in their own way.



You are his mother, you're different.


I hope I have explained this sufficiently.

I have one child (almost 7) with classic autism and one child (over 3.5) with OCD and probable AS. Very different as far as the amount of care and expense involved.

The older son with classic autism was speech delayed but is doing okay speech-wise now after me quitting my job and spending hours a day teaching him to talk and read. He has information retrieval issues and short-term memory issues that prevent him from learning anything quickly and that require me to repeat lessons [speech or academic] over and over. (I use computers, videos, picture books, and flashcards to assist with this). He has also had terrible fine motor skills requiring extensive occupational therapy and behavioral problems requiring both medication and lots of social skills work. He is doing very well, but it has been a long and expensive road. College and a regular job in his future? I don't know if we will be able to work around his memory issues to achieve these type of goals. To my knowledge, the rate of mental retardation with classic autism is about 40% and the unemployment rate is about 70%. To my knowledge, at least here in the U.S., about 40% of those with classic autism are non-verbal.

My younger son, who probably has AS on top of a raging case of OCD, is another matter. He is as sharp as a tack and can learn quickly. With medical help for his OCD, I think that he will be fine--maybe a little nerdy, but he will certainly be able to work, etc.

Of note, seizure disorder cooccurs in about 40% of individuals with autism (probably more often in classic autism, but I don't really know) and up to 80% have a comorbid mental health issue (selective mutism, obsessive compulsive disorder, social anxiety disorder, bipolar disorder, etc.) Some parents of kids with AS have quite a bit of difficulty due to these types of issues. Or maybe they try too hard to classify a child with classic autism as AS.

Of course, some parents are better able to adapt to unexpected situations. Some parents have more resources. My husband, who has bipolar disorder, cannot accept his own diagnosis, much less deal with his kids' issues.

Just my opinion.

As a parent you have these ideas of who your child is and how you hope their life will be. The diagnosis is unexpected and forces you to change your ideas about what your child's life will be like. Some people say they grieve the loss of a child they were expecting, and move on to see what a wonderful gift this child is to them. It seems bad because you are new to this, and there is so much unknown. A parent worries about their child...that's normal. You will come to see that autism is not the end of the world. You will find yourself learning things about yourself and the world that you would never be able to experience unless you had a child on the spectrum.

As a parent you have these ideas of who your child is and how you hope their life will be. The diagnosis is unexpected and forces you to change your ideas about what your child's life will be like. Some people say they grieve the loss of a child they were expecting, and move on to see what a wonderful gift this child is to them. It seems bad because you are new to this, and there is so much unknown. A parent worries about their child...that's normal. You will come to see that autism is not the end of the world. You will find yourself learning things about yourself and the world that you would never be able to experience unless you had a child on the spectrum.[/quote]

I think that this sentiment was expressed beautifully.

Some very good points and questions. From my perspective it seems the problems people with ASD have are primarily to do with the interaction with the world, the way it is; the world setup for NT people, and not so much intrinsicly the actual difference they have. So thats one of the most important thing to deal with.

Your son will need more support and guidance than another child to have a 'successful' outcome. Really it will have to be one of your primary focuses if you are intent on that.
Have a look at a blog by a poster on here Kuma, about his boy. http://2echild.blogspot.com
The child presented as Autism when he was very little, gaze avoidance etc, you can see what has been put into the boys learning.

Hi there. Sorry to hear what you are going through and you do seem quite upset and panicked.

May I ask exactly what it is that has got you so worried?

Also, if you don't agree with the diagnosis, why not get a second opinion?

You seem to be influenced by all the negitive media that surrounds autism. I have autism as I was diagnosed as a child and I have my difficulties but it gives me gifts that I would not have if I were an NT. As far as the duality of his nature of how he is with you, then different with others probably has to do with sensory overstimulation of crouds which I am much more functional 1 on 1 with someone I know than a crowd.

my best gift is poetry...I have been writing poetry for 20 years and have found very few writers that write like me. I am self taught and I use my visual thinking to screate images in the readers mind. I am in the process of getting published.

trying to force him to be nornal will only backfire on you because your son is wired differently.
Autism Speaks has put out alot of stuff in the media about how horrible autism is because they make money as a nonprofit off of making autism seem like the end of creation, but that is just the media for most.
Some people with autism have mental retardation, but they are a minority, most of us are capable people. There are some amazing people on this site with AS, I met authors, engineers, computer progamers, psychologists, artists. Autism is called a spectrum disorder for a reason...it runs on a spectrum of severity to slight difficulties. Autistics go from non-verbal with mental retardation to Nasa Scientists who are freakin geniuses but refuse to drive to work, so co-workers have to pick him up (I know such a person) and most people fall in the middle.

I know coming from a communist country that you view being different as a danger of being singled out of the crowd. But here, autistics have somewhat of an easier time because of the highly individualized nature of the US, we still can be singled out, sometimes that is good and sometimes its bad, but we learn to embrace differences.
You will find much of his dual nature has to do with sensory problems.
As far as meltdowns go...he is still young...they will embarass him as he gets older...trust me
but that wont stop him from doing it.
here is the anatomy of a meltdown....sometimes I get so overwhelmed that it is like a thunderstorm of emotions explodes within me...then all of it becomes so overwhelming that I am struck by emotional lightning and then a meltdown occurs as if I am being emotionally electuted. I have no control over myself during one and when it is over....I am drained. the best way to stop one is the predict it coming and remove myself from the situation before I get to the breaking point. There seems to be a threshold....if you remove him before the threshold is breached...it can be prevented.

I hope that gives you insight

Jojo

Hi,
I think your son sounds like a normal kid. Psychologists seem to have diagnose children with autism if they show any behavior out of the ordinary using standard tests such as CARS. If you object to the diagnosis you should get a second opinion.

The critical factors are -
a) will your son need therapy?
b) will your son need support in school?

Ironically the worse the diagnosis the more likely you will receive government financial support. If there is little need for support then technically the diagnosis is an utter waste of time.

The only people who consider ASD a "devastating illness" are people who make judgements over your child and you if you listen to others rather than focus on your son's needs. At the end of the day your son is the one who matters not people with self inflated oponions.

Actually there are plenty of autistic people far worse off than your son and worse than this girl who have also done quite well as adults. My father and brother were born with speech delays. In my brother's case he was classified as ret*d in primary school.

Both of them developed without any therapy and blossomed on their own accord to the point that neither even remember or accept their childhood problems. I have talked to both about autism and they refuse to accept they had it (despite my daughter's dx).

My father is a retired university lecturer and brother is an electronics engineer. If you meet them now you wouldn't guess in a million years they had severe autism symptoms as children.

Very true that some autistic individuals get better without therapy. I have read that high IQ is the best predictor of recovery. Individuals with very high IQ may get better without any therapy whatsoever. It happens. Cyberdad is totally right.

I think that most kids benefit from good therapy, though.

Yes of course I agree that therapy helps the child at a younger age to catch up with their peers.

I dragged my family as examples here not to showcase their intelligence but demonstrate that in addition to recovery from symptoms (i.e. stims or language delay) that their outcome exceeds the expectation of the diagnosis they might have received (if they were DX).

Here I may be going out on a limb, but the current debate of Aspergers Vs HFA seems dead in the water to me. My father would have been diagnosed with HFA while my brother could easily have been LFA yet they as adults show absolutely no symptoms of autism at all. I myself self DX as AS but pass easily as NT in the workforce.

Hello Goodolddays---

First of all, Welcome to Wrong Planet! I hope you have found a place that you can discuss your concerns and find answers to questions that you have...

It sounds like your son has AS, but from the description you give, he seems pretty high functioning to me. I have a 6 yr old boy that was diagnosed at 2.5 yrs old on the spectrum/possible AS. He had physical delays, language issues, did not play with children at all, did not really play with toys much. However, he has ALWAYS been tuned in to me and his father. He was never in his own world as far as I was concerned. He was loveable with us and very interested in what we were doing.

My son has been in therapy for 4 yrs, and he is making great progress. He still has a very hard time around children and he definitely has ADHD issues. He has many strange quirks, but overall we are very hopeful for him. Do we know what his outcome is going to be? No, I don't think any parent ever knows what the outcome of their child's life is going to be.

Now that you know what you are dealing with, the best tool to cope with this is knowledge. Read as much as you can, and it will help you to handle the problems that your son has problems with. Every case of Autism/AS is different. So some of what you read will apply, some of it won't. Just keep reading and if your son does indeed have AS, you will begin to find your son in the reading.

It is normal to grieve and to be upset about the diagnosis because it is not what you were expecting for your child. I remember being devastated too, I thought my son would never know that I was his mother or would never be able to express his love for me. Well, he is doing all of that now, and that is all that matters to me. Yes, we still have our struggles and there are so many things that just don't come naturally to my son that have to be taught. But, I feel like that best thing that I have given my son is unconditional love and support and understanding. This will go along way for his future.

Your son seems to be in much better shape than my son was in the younger years, and my son is progressing, so in my opinion, your son is going to be just fine. He will probably go on to do great things. I just think you and your husband are going to have to take the time to let this sink in.

Best of luck to you!

I do not see how anybody could call ASD a "devastating illness". Have you heard about cancer, AIDS, cystic fibrosis, and so many other "illnesses" that can be considered "devastating"? AS is not an "illness". It is a syndrome. To learn the difference search over the Internet.

If you do not know by now the difference between AS and Autism, I do not know what kind of "enormous amount of info" you have read so far, because when I started reading about AS it was one of the first things I learned. It seems you need better sources. You can go to: http://www.autism.org.uk/asperger, http://www.autismspeaks.ca/aspergers.