Why can we not get a proper DX?

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Hi, my name is Ali. I have a six year old son whom my husband and I as well as our family physician and a psychologist conclusively felt had Aspergers. My son has been dealing with many issues within the past two years that are tell tale signs of an Autism Spectrum Disorder. Just about every characteristic listed for Aspergers my son seemed to display. Here is a list of some of them:

1. Very socially awkward, does not make friends, chooses to play by himself, and pretend as though no one else is there
2. Avoids eye contact with unfamiliar people, as well as his teacher at school, peers, pretty much anyone other than his immediate family.
3. Seems as though he is in a daze most of the time
4. Very aggressive behaviour when he is needing something right away, does not have patience to wait for anything and will go into a meltdown. When meltdown occurs, he needs held or touched by my husband or myself. If we are unable to do it right away, he will self mutilate, scratching his skin, hitting himself, or banging his head.
5. He cries about 75% of the day over nothing, someone looks at him the wrong way, his sister is being too loud when she is playing, if I am not with him or pay attention to him every minute of the day, this triggers a meltdown.
6. Lots of meltdowns, loud noises (tv, or people's voices seem to affect him the most) and bright lights. Any change in his routine, I mean ANY change. (this has been this way since he was about 2 years old) Anyone touching his things causes meltdowns, he will not share with anything, his toys or his belongings with peers or adults, it seems to make him nervous.
7. Is very fixated on specific things for long periods of time, at first he liked trains, then it was Presidents of the US, then it was Money and how different presidents are on money (he can name every denomination) and then when he was 4 it became Batman.....everything Batman, no other superhero besides him and most recently he has gathered his toys and put them in purses, each purse represents something. For example, he has one purse with just play doctor stuff in it, one purse with just dentist items in it, one purse with teacher items in it and the list goes on and on. He has over 15 purses with specific items in it. He makes list with my husband every night about the items a doctor uses (the real names of the instruments) and whichever items he does not have in his purse the put it on the list, it is a very in-depth conversation.
- Now on the other hand, even though my son has ALL these toys, he NEVER and I mean never plays with them like a child would. He just like to keep them all organized and away from everyone. He has no desire to play anything, toys or games throughout a normal day. All he wants to do is talk and talk about what a police man does, or a fireman does and everything and anything associated with them.
8. He does not like certain, smells, germs seem to bother him greatly. For example he had gotten marker on his hands today and it was driving him crazy that it was on him and must have asked me 50 times when it was going to come off.
9. Very very anxious and frustrated
10. Seems sad and dispoondant
11. Clicks fingers when he gets nervous or whistles or clenches fists
12. Has speech problems to this day and is working with a therapist, started when he was around 2.
13. Will not leave my husbands or my side about 90% of the day, even when we go to the bathroom he asks how long we will be.

The list can go on and on and I could be more specific but it is just really too much to list. My issue is that we have spoke to our family physician, as well as another psychologist, whom referred us to a facility that is specifically supposed to deal with this type of disorder. We waited over six months to get in. Our first appointment was a month ago where we met with another psychologist who felt we met the criteria to do a more extensive evaluation of him. His notes reflected there concern for the following:

1. Rule out Aspergers
2. Disruptive Behaviour
3. Anxiety

This first appt we just talked with our son in the room, however my son did no talking nor any evaluations occurred. Now today was a first "official" meeting with a new psychologist, a speech therapist and also some type of nurse. In this evaluation, we had to bring back the 20 or so forms we had to fill out regarding my son's behavior and mannerisms, as well as my husband and I talked to these people for over an hour about his behavior. The doctor then said he was going to meet with the other two people and give us an idea of what they are thinking could be a dx. 5 minutes later, without ever looking at or scoring the paperwork, they came back and said we do not feel it is a Autism spectrum disorder and that he has anxiety issues??????

At this point, my husband and I looked at each other and were dumbfounded! How in the world would they completely rule out Aspergers based on meeting with my son for 15 minutes with a speech therapist? As I mentioned, they did not look at the forms we provided back to them, nor did they score them yet, they did not meet with his alone and do any type of motor skills or developmental evaluations on him (which they are supposed to do in the next appt we had set for June 10) and come back so confidently to us and say he is not an Aspie child? For goodness sake they have not even talked to him yet or watched him for an extended period of time to see how he acted???? The doctor then said that he knows we spoke to our family physician, as well as another psychologist that had done some previous assessments on him and they were leaning towards Aspergers but we just don't see it. He continued to tell me that with the new dx that they will be getting rid of the Aspergers category that is currently on its own and group Aspergers with Autism and do away with the fact they are two different disorders, so even if he has mild Aspergers he is not Autistic???? WHAT are you saying? We were so confused.

He then said they will still consider the June 10th appt to see his motor skills and behaviour but he does not feel he will change his mind. First of all, I cannot even begin to tell you the frustration my husband and I felt. WE KNOW as parents that this is NOT just anxiety. Honestly he is so text book Aspergers he could be the posterchild. Now don't get me wrong, we would love to get a dx of just anxiety and not any type of Autism, but we know differently. SOOOO.....here we are again, frustrated, confused and not knowing how to cope with our son and his disorder. Where do we go from here?

My question for you all is how early was your child dx? Was there any kind of misdiagnoses at first? What type of testing did they do with your child? Do you have any words of encouragement for us?

Thank you for taking the time to read this lengthy post. I would really really appreciate some feedback, we need as much support as we can get! Thank you!

Columbus, Ohio

I dont know where you went for an assessment but you should check out this web site. The Easter Seals will assess any child that shows Autistic symptoms. I would call them and ask if they would evaluate your son. This is the web site for your local chapter.
http://centralohio.easterseals.com/site ... S_homepage
My son was diagnosed with Asperger's at age 6 and my Daughter with Autism at age 3. In California we have the Regional Center, they assessed and diagnosed both my kids for free.....Easter Seals is basically the same thing. Just tell them you need help!

Thank you, I will check it out!

we got a tentative dx because the psychologist was afraid to label my son. my feelings are he has a;ready been labeled as rude disruptive , etc...., so at least they would know at school that it is not defiant behavior. Do you have to have a ped dx him , or is the psychologist enough. MY son has anxiety and ocd which the psychologist felt was worse in his second visit. I always suspected aspergers.

I would be as reluctant to label a kid at that age unless it was a pre-requisite for some sort of social policy that is desired. If you got one I would not be sure about it's use other than self information, unless school and such was really that bad.

My son was diagnosed at 2.5 yrs old with PDD-NOS-possible Asperger's. This was done by a developmental pediatrician. Most of the diagnosis was based on the extensive questionnaire that we filled out. The doctor probably spent about an hour with us and our son (we only had one visit) My son is almost 5 now, and the public school that he goes to had the school psychologist do their own evaluation on him about a month ago. It too came back as PDD-NOS/possible Asperger's. PDD-NOS (if you are not aware of it is Pervasive Developmental Disorder, and is on the Autism Spectrum.)

My son exhibits many of your sons symptoms, but he does not really have meltdowns and too many sensory issues. He is also not as rigid as you describe your son. I am really shocked too that your doctor wouldn't give a diagnosis. I would say by 6 yrs old with all of the behaviors you describe that it is pretty clear cut. I agree with Lilolme, that Easter Seals is a great way to go. I am sorry you have gone through all of this.

Best of luck to you and your family!

that really does sound odd. I'd question them extensively and not back down if you feel they're not putting in the time to learn more about your son. I've seen this happen with medical doctors and my family members, and one thing is for sure- not being assertive about this stuff can get you steamrolled

Thank you for your support. Angelbear, this doctor said that their might be a slight chance they will dx him with PDD-NOS. In my opinion they are too nervous at his age to give him an "official" diagnoses, so they are just going to chalk it up to Anxiety. MsLeeLoo I will be going in on the 10th fully ready to give them my opinion and to re-iterate my concern of how they are able to give a diagnoses without even watching my son for a period of time, let alone not scoring the standardized tests for Autism/Aspergers. I do not feel all the basis were covered, this is why I need input as to what tests/procedures were done when your Aspie kids received their dx. We are still so new to all of this and just want what is best for our child. I went to bed last night with tears in my eyes. Somedays I am just so frustrated and so fed up with trying to make everything better, nothing seems to help him. I just want my baby to be happy and have the least bit of anxiety or frustration that an average 6 year old goes through. I am so scared for the future, and all the pain he may have to suffer from peers teasing him or him not feeling like he fits in. No parent wants to see this happen to their child, I just wish I could give him everything he needs, so he never has to feel another day of stress!! !!

Thanks again for your support, I feel as though I am probably going to be an active member on this board as I feel at times no one else understands what our family is going through.

God Bless you All!

Hopefull-
I know how you are feeling. It is overwhelming to think about all of this at one time. It is the uncertainty of it all that is scary. But, once you get through this diagnosis process, and start to learn more and more about AS/Asperger's, you will learn more about how your son's mind is working. You will learn better ways to interact with him, and ways to help him cope better. Has he been getting any therapy? Once he gets the diagnosis and gets into a therapy program, then I think you will see some improvements. Right now it is just that you are frightened about the unknown. Try to just take it one day at a time, and not worry so much about the future right now. I had to do the same thing because worrying about the future is just too overwhelming. There is no way to know how things are going to turn out for your son. If he gets the right help, things could really improve and he could do okay. Trust me though, I know it is hard not to worry when you love your child so much.

Just try to remember that your son is a very unique little boy. He will not be like all of the other kids, but he will have his own gifts and strengths. This is going to be a journey that will have many ups and downs. You will have days that you will just want to cry, but you will also have days of joy when you see your son make progress.

Hopefully, you will get through this diagnosis process soon, but in the meantime, just try to love your son unconditionally, and try to be strong for your son.

Hang in there!

i am SO tired of hearing the claptrap about not wanting to label a child at a young age. ive heard it multiple times the past couple months, and again yesterday from someone at my sons schools special ed office. my son is 4 and we went outside the school system and got a medical diagnosis of asperger's from an independent psychologist. his school had us do all the paperwork and evaluations and they did observations, then refused to determine one way or the other whether they thought he was asd. i had both the school psych and social worker sit there at an iep meeting and say 4 is too young to diagnose asperger's and that they didnt want to label him at this age.

children get labeled every day by adults and children alike. without knowing there is an asd diagnosis, our children will be labeled difficult, spoiled, bratty, emotional, disturbed, or even worse. other kids will label them weird, geeks, etc. labels are just superficial descriptions.

a diagnosis is NOT a label. it is a diagnosis. it tells you why things are happening, treatments or therapies that may work, what you may expect in the future. it is an identifier that gives a set of symptoms/traits and possible treatments.

i have two main complaints with the purposeful lack of diagnosis based upon age.
one is i think its a self-serving stance for the diagnostician. asd is behaviorally diagnosed. it is very subjective and dependent upon the evaluator. the risk of misdiagnosis is therefore higher than a genetically verifiable condition. the diagnostician doesnt want that higher risk of being wrong, and i personally think that drives some of them, not all mind you but some of them, to refuse to diagnose what should be diagnosed.

the second complaint is that many studies show that early intervention leads to better prognosis. the earlier the diagnosis, the better for the child. and yet we have evaulators refusing to diagnose based upon a young age. its contradictory to evidence based medicine.

so i would advise, if you arent happy with the evaulation process (and im not saying the outcome, but the process and whether you think it was accurate and effective), seek a second opinion.

I had a sort of opposite experience. My eldest two do have AS and other stuff, but when I was getting Little Guy tested the Psychologist, after meeting him and before the tests were scored said she was very confident he had AS. Then after the papers came back she said he clearly did not have it, but was clearly not NT.

I know it's frustrating, but they may be doing OK. They shouldn't have said that much with great confidence until they'd spent more time on the issue, but remember they see a lot of kids and this is all much more familiar to them so they may be a little over confident...or a lot. I'm not condoning their behavior but saying they may get it right in the end.

A lot of what you listed are not behaviors that are necessary for ASDs. They may be things that some people with ASDs do, but are not at all part of an ASD diagnosis. Your son also has a lot of stuff going on and they may not be able to see what's happening with him in depth until they get some of it better sorted out.

Remember that the important thing is that you find the right treatments, services, and therapies to help your son have a happier healthier life. Diagnosis is important but not as important as that. Diagnosis is a tool to achieve that, but not the only one. I'm not saying you shouldn't seek to get the right ones, just that you shouldn't loose hope if there are some challenges. This encounter is one step in the journey, not the whole journey.

I think these practitioners should have been less commital with you and explained that his situation is complex but that they are thinking it might not absolutely be an ASD but there are clearly some things going on that are treatable, and that they can recommend some things that will help and that in time they may be able to help figure out the whole picture.

Once you're into some kind of treatment you're on the right track and the plan can be changed and altered as you go. If he starts to get some of the speech and anxiety under control, he may be able to share more about what's going on with him which will give more clues as to what else is happening. Also, seeing what works and what doesn't will give you clues. I know this isn't all the answers you want, but it's a start and that's something.