ADOS test results are in -- No ASD

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The title says it all. I am full of a mixture of emotions now. I have been preparing for these results for months, but honestly don't think I prepared myself for how I'd feel for the no answer.

The tester thought I'd be relieved that there's no ASD. I think I'm more frustrated now.

On the one hand, I'm disappointed and don't really agree with it. I don't think the testing that they did addressed a full enough range of specifically Aspergers traits. I think it focused too much on communication and reciprocity.

On the other hand, I feel like a bit lost. It's like where does this leave me now? The meeting afterwards made it seem like he's just shy and needs to practice his social skills more often. However, the concerns you're having are normal 5 year old behavior.

Maybe I'm making more out of it than I should. I don't know.

They do want him to have a speech therapist consult for possible pragmatic speech issues and maybe have us see a counselor for whatever.

His behaviors are worsening. It was suggested that he should be around more peers more often. I'm not sure if that's such a great idea. I don't want him to hurt someone.

I'm probably all over the place, but I hope it's coherent enough.

Please share your thoughts. Thanks.

For one thing, I don't trust the psychiatric profession very much. I've been diagnosed with many things between my first and most recent diagnosis of autism. My last diagnosis was made by a neurologist, and when I told a couple of speech therapists about being autistic, both said they strongly suspected that I was.

I can imagine how frustrated you would feel. Where I live kids need to see three different specialists. It's expensive, but it's worth it as they see a Paediatrician for referral (we saw a specialist Paed who has seen a lot of ASD). He referred us on to a Speech Pathologist and a Psychologist both of whom are specialists in ASD dx.

It's interesting they say he may have "pragmatic speech issues" but no ASD.

I don't know how things work there, but I looked up the ASOD and I don't think that would cut it as far as a definitive answer. We got a lot of dismissal until my son was seven and it became blatantly obvious there was an "issue".

If I were in your situation I would seek out a specialist for a second opinion. Trusting our intuition with our kids is VERY difficult when professionals who are meant to assist us aren't paying enough attention. It's difficult not to feel like a hysterical mother or someone who is trying to assign something to our kids that "doesn't exist." Trust your gut.

It's possible it may have been a mistake but who knows or it's possible he doesn't have it. I have had a doctor who said when I was ten I didn't have AS.

But why do you think getting him a ASD diagnoses is important? Why not focus on getting him help for his issues like with speech or social issues? Or is this all about trying to get him the education he needs and the only way for that is if he gets a AS diagnoses?

It isn't just for kids. The same rules apply for adults. I have to see 3 specialists for my dx. I saw my phyc that specialises and she is certain i have at least HFA but i need the 2 other professions for a dx. One is a speechie. umm, i talk fine. lol.

Oh not on this side. Here adults can get a dx with just a psych evaluation. I say "just" a psych evaluation. It costs $900 for an adult assessment, so it hopefully is more involved than "just" a psych evaluation.

s**t maybe i should have flown west. I would have saved a few thousand.

its incredibly difficult to know what to do if you dont know what is happening. you are left in the dark, scrambling to figure out what to try. that diagnosis is a HUGE help, because then you have the why answer. it helps you know what to pursue for treatment, what to expect for the future, helps you understand the behaviors as they happen. i have been down both paths with my kids, my oldest has never been medically diagnosed and only got school dx of asd this year at 14 yo, my youngest med and school dx at 4. we have had an incredibly hard 14 years with N, things are finally getting easier now that we are understanding better how he works, but he has always been a harder child to raise than even our autie.

for a lot of families, getting the diagnosis changed the world.

MomtoS, one test, one tester, doesnt make or break it. you can seek a second opinion if you feel the diagnosis is wrong. my youngest is a textbook example of classic autism, yet his first psych misdiagnosed him AS, and his school refused to diagnose him asd at all, even with the outside psych report. i had to find a more experienced neuropsych to get a correct med dx, and thankfully the school got a new psych who didnt have his head up his *** and we got his school dx changed too. see if you can find a diagnostician who is really experienced with asd to have another assessment done.

I'm going to copy that for future reference when someone suggests we shouldn't "label" our children, etc. Very well said, azurecrayon.

My mom could probably relate to that because she knew I had something but all these labels I was getting didn't help because they didn't explain everything and the treatment I was getting wasn't working. She was aware of my problems but she couldn't get me help for those?

I wonder why labels do help? Why do people want labels on people just so they can help them rather than helping them with their issues? Is it all about knowing how to treat them and what therapy to give?
When kids are given the correct label, does it force the schools to give them the education they need?

I just wanted to let you know I've read your post and I'm thinking about it. I'm less sure than I used to be as to what all the labels mean; it seems quite a few kids I've been sure were ASD are testing out, so I need to decide what to make of that, too.

The only label you want is the right one. We don't know yet if this person made the right call, but ... while it's nice to have the right road map as soon as possible, high functioning AS is tricky to spot in a 5 year old. I'm also wondering more and more about other conditions that may share some traits but aren't AS, and what that should mean to the process ...

Which puts me back to what I've often told parents: if strategies from the board help your family, use them. If they don't, don't.

Meanwhile, of course you are frustrated. You went looking for an answer and you don't have it yet. Maybe he's just a super interesting 5 year old or maybe there is something you need to know but don't .... Accept the frustration, own it, and let yourself feel it.

And ... I'll keep thinking about all this.

Why is it so important?

Hmm just my thoughts.....

If the parents or the doctors don't label the child, society usually does. Usually society gives a nasty very unflattering label, eg; lazy, rude, manipulative, obstinate, arrogant, dumb, mean etc etc.

I have 2 sons. A 21 yr old with currently no label, but huge issues that have always been present, and a 12 year old with 5 labels.

My family are now extremely accepting of my 12 year old and his limitations and he is is coping fairly well. My 21 year old has struggled threw life. A lot of his issues are very similar to my 12 year old but apparently they are unacceptable, and my family and friends often tell me he is lazy and treat him (not openly) like he is dumb.

I recently sort out an asd dx for my oldest, the first doc was in my opinion an idiot and had no clue as to the entire spectrum. We are now seeing another psychologist for the dx, this one seams to have a much better understanding.

YOU are the child's best advocate. YOU know your child. Get another opinion, keep shouting until your heard. Good luck.

I don't know about the first part of your question - I think the answer we want is that it's about offering the right strategies...but I think sometimes it is just about fitting someone into a box, and that isn't good.

To the second part of your question, yes - without the label of Asperger's, my son would be stuck without help from the school: some impairments, like sensory processing disorders, however accurate, are sometimes not recognized as disabilities and therefore might be ignored.

MomtoS - I'm so sorry that you're left with confusion when you hoped for answers. I think, though, the fact that they're offering pragmatic language therapy means they know there is an issue and they're going to help you with it. If I could go back in time, pragmatic language therapy is where I would have started for my own son; a lack of good pragmatics caused a lot of his most problematic behavior.

Knowing what I know now, I'd take the therapy they offer and ask to re-test when he's seven or so (which seems to be an age that comes up a lot for Aspergers.) It may be that, while he's difficult to handle and you have suspicions, five is just too little for him to be strongly differentiated from his peers. It may not be autism - who knows?

They should go over the test results carefully with you, and it should offer you a good picture of his assets and adversities, and they should be offering you suggestions on how to handle the adversities (e.g. speech therapy.) If you didn't get this, ask for it (I assume there is more going on than just speech?)

Momsparky above said what I was going to say. At age 5 I don't think my son would have been diagnosed AS and yet he is an aspie. He was affecting only me negatively and I was figuring out how to handle him well enough. He was unofficially diagnosed at age 9, when I was at my at my wit's end.

Momsparky said to take up the speech therapy. You might also take up their offer or suggestion of counseling. That might help you with all the issues you feel they were missing in the testing and pave the road for a proper diagnosis, if necessary. Stay clear about what his real issues are. Maybe keep a journal for yourself. Just my thoughts.

Im awaiting diagnosis for my 14 year old and trust me, I do feel alot of questions will be answered if she is Aspie. However, for your son, they have given a major clue there are issues with pragmatic speech, they have clued into that and he will get the support. Focus on the issue and be patient. There is lots on the net about children who struggle with understanding of language. So type it in and focus on your sons needs.

I will be gobsmacked if we do not get a dx as life is so difficult and we need to know what has caused and compounded depression in her teenage years.

I hope that helps as I know answers and lables can have two edged sword. Your childs needs are rearing up and that is what we should focus on.

Thinking of you as its not an easy road, too indeffinate and wooly.

Regards

Hi, I read your post. My daughter's neurologist said that he gave my daughter the ADOS to rule out autism because he believed my daughter had Asperger's syndrome. He said that he believes that there is a difference diagnostically between autism and Asperger's. He said that the ADOS cannot diagnose Asperger's syndrome, only autism.

if he is correct, then the fact that your child did not have autism on the ADOS does not rule out Asperger's.

Good luck, I know how hard this is.