Strongly suspect Asperger's in 4 year old DS, long wait for dev. ped.

[jenniet]

Dh and I have worried about our oldest ds on and off since he was about 12 months old.  We have always pushed our worries aside until recently.  Just before the holidays, all of our son's issues came to a head (he turned four in Nov.) and we no longer have doubts that something is amiss.  After lots of reading we really believe our son may have Asperger's Syndrome.  I feel an extreme urgency to get him diagnosed but the earliest appointment for the developmental pediatrician isn't until the end of May!!!!!   We have an appointment with our local school district for an evaluation in mid-Feb. but my understanding is that they won't give us a diagnosis.  Any advice?  I feel very, very guilty that we didn't address this sooner.  :(  

P.S.-  Our reg. ped. referred us to a dev. ped. but didn't think our son is on the autism spectrum because he sometimes makes eye contact and can carry on a conversation.  I disagree...

[Emmeline II]

Originally Posted by jenniet 

Dh and I have worried about our oldest ds on and off since he was about 12 months old.  We have always pushed our worries aside until recently.  Just before the holidays, all of our son's issues came to a head (he turned four in Nov.) and we no longer have doubts that something is amiss.  After lots of reading we really believe our son may have Asperger's Syndrome.  I feel an extreme urgency to get him diagnosed but the earliest appointment for the developmental pediatrician isn't until the end of May!!!!!   We have an appointment with our local school district for an evaluation in mid-Feb. but my understanding is that they won't give us a diagnosis.  Any advice?  I feel very, very guilty that we didn't address this sooner.  :(  

P.S.-  Our reg. ped. referred us to a dev. ped. but didn't think our son is on the autism spectrum because he sometimes makes eye contact and can carry on a conversation.  I disagree...

Then your regular ped doesn't understand Asperger's. I'd take that appointment, it's a relatively short wait; ours was a 9 month wait (it's next month). In the mean time you could consult a psychologist/psychiatrist that is experienced in this diagnosis, or seek out a therapist (CBT) to treat the symptoms without/pending a diagnosis.

http://www.ninds.nih.gov/disorders/asperger/detail_asperger.htm#115353080

Sensory Processing Disorder

[KCMichigan]

Originally Posted by Emmeline II 

Originally Posted by jenniet 

Dh and I have worried about our oldest ds on and off since he was about 12 months old.  We have always pushed our worries aside until recently.  Just before the holidays, all of our son's issues came to a head (he turned four in Nov.) and we no longer have doubts that something is amiss.  After lots of reading we really believe our son may have Asperger's Syndrome.  I feel an extreme urgency to get him diagnosed but the earliest appointment for the developmental pediatrician isn't until the end of May!!!!!   We have an appointment with our local school district for an evaluation in mid-Feb. but my understanding is that they won't give us a diagnosis.  Any advice?  I feel very, very guilty that we didn't address this sooner.  :(  

P.S.-  Our reg. ped. referred us to a dev. ped. but didn't think our son is on the autism spectrum because he sometimes makes eye contact and can carry on a conversation.  I disagree...

Then your regular ped doesn't understand Asperger's. I'd take that appointment, it's a relatively short wait; ours was a 9 month wait (it's next month). In the mean time you could consult a psychologist/psychiatrist that is experienced in this diagnosis, or seek out a therapist (CBT) to treat the symptoms without/pending a diagnosis.

http://www.ninds.nih.gov/disorders/asperger/detail_asperger.htm#115353080

Sensory Processing Disorder

 I agree, that is not a bad wait.

Meanwhile- go through with the school eval. At the least, it will give you more information to take to the DevPed. and open possible opportunities through your schools.

Often a PDD_NOS dx is given before age 6/7, but I have seen an Aspergers dx earlier than that. Schools will most likely offer a ECCDD (early childhood developmental delay) or ASD if he qualifies. and yes- many (but not all) schools have an Autism team that will dx ASDs across the spectrum. Our current area has a country team that does evaluations for everything and they are able to qualify a student for services through the schools for ASD services, not all areas have this- they have to have a psychologist and Autism Specialist on staff.

You even could possbily get therapy through a local clinic- does your insurance cover OT/Speech, etc?? You may be able to get an eval and services through the county just as fast as through the schools if your insurance will cover services and/or your PEDI refers you or a a neurologist refers you (depending on your insurance, you may not even need a referral to get an eval through an independent pediatric therapy center). 
 

[Linda on the move]

Thats a very short wait. Where we live, the wait is nearly a year.

What do you feel will change with a dx? Because other than school accommodations, nothing changed for us.

My favorite book for parents new to all this is "Quirky Kids" by Klass. It's a very reassuring read and discusses the whole batch of dd's-- ppd-nos, spd, asperger, ect.

[jenniet]

Thank you everyone!  Another question, we took ds to a naturopath and started him on a homeopathic remedy and a gluten-free diet a month ago.  We have seen a big improvement but I am now afraid ds will be having a "good day" when it comes to his evaluation and he won't qualify for the therapy he really needs. The naturopath suggested putting him back on gluten right before his appointment but he went through such a detox period that it almost seems mean to do that to him.  Any suggestions?  

Emmeline II- Yes, I like our ped. because she is the only ped. in our area who accepts that we stopped vaccinating our children but I also feel like she dropped the ball with my older son's issue.  

KCMichigan- Thank you for all the information.  I am just now stepping into the special needs world and still have a lot to learn.

Linda on the move-  Wow! A year?!!!  I had no idea the waits were so long!  I am hoping a diagnosis will confirm our suspicions and we can explore ways to help our child.  At the moment we have a hard time bringing ds out in public places because he gets so overwhelmed that he has major tantrums and gets very aggressive.  He doesn't play with other children, has an extreme interest in animals but cannot really draw or ride a tricycle, etc.  He spins around all of the time and hates to wear clothes.  He often shouts when he talks but he doesn't have a hearing problem.  He doesn't sleep well and if he gets slightly off of his schedule he is a mess for days.  I feel like we walk on eggshells around him because so many things set him off.  We are having a hard time and I suspect there are therapies to help him.  Thank you for the book recommendation.  I will definitely read it!  

[khaoskat]

I am going to come from a different approach, because I have BTDT with two children.  You say he does not sleep well.  My suggestion would be getting a referral from your Pediatrician for a Sleep Study.  You would be amazed at how many things sleep disturbances can mimic.  I have two children who have sleep problems.  My eldest has sleep apnea, and many did he get agressive and physical with major melt down tantrums.  My second has RLS/PLM and he is hyper and sensory and almost swear shows some signs of Asperger's as well.  

Another thing to check also, along with the sleep study, is the serum iron level.  If it is too low, it can cause issues with sleep, my second son also suffers from this.

You may get this done prior to your Dev. Ped, appt, but our Dev. Ped suggested the sleep study because of his issues and his sleep disturbances. 

Also, ask your Ped about melatonin, after you do the research, it did help us get our son down to sleep a bit easier, but not always keep him asleep.

[Linda on the move]

Originally Posted by jenniet 

We have seen a big improvement but I am now afraid ds will be having a "good day" when it comes to his evaluation and he won't qualify for the therapy he really needs.

... I am hoping a diagnosis will confirm our suspicions and we can explore ways to help our child.  At the moment we have a hard time bringing ds out in public places because he gets so overwhelmed that he has major tantrums and gets very aggressive.  

A dx takes MANY factors into consideration. It's not like they just look at the child and pronounce them XYZ based on how they are acting at the moment. My DD did lovely at her last eval. It was one-on-one with an adult who is great with kids. She's fine in those situations. Her dx is based on the pattern of her behavior in other situations, an amazing amount of filling in the dot forms that I completed, input from her school, the pattern of highs and lows on her IQ tests, etc.

I understand your second quote above, but you can start exploring those things now. It sounds like a lot of what is going on is sensory, so I'd recommend reading The Out of Sync Child. Finding the right sensory diet for him can help.

It would be very nice if they said, "your child has X so you need to do Y,"  but it doesn't really work that way. Some options for therapy may open up, but for the most part, figuring out what really works for your son may just be trial and error. (sorry for the bad news, but I don't want you to feel too let down after you get a dx)

[sbgrace]

A competent evaluator will pick up autism (definitely) even on a great day in a kid. The underlying stuff doesn't go away. When my son was formally dx'd I really thought he looked typical! In reality, the stuff that I saw as autism back then really wasn't the crux of it at all. Now, a bad evaluator can mess up--but they'll mess up on any day. If your son off gluten no longer has autism signs imo it's not autism. At any rate, I wouldn't put him back on gluten. If you're worried about good vs. bad days maybe you could video some of his bad days at home just for documentation to show them what you see at home.

Beyond that, does the diagnosis in your state mean insurance pays for therapies? (It does in our state and I feel fortunate for that). If it doesn't "give" you anything of substance via insurance then, imo, you might as well go ahead and do whatever you plan to do when he is formally dx'd. The school probably won't do anything different based on the dx anyway--at least here they don't--they go by their own assessment of school functioning and needed accomodations. i guess I'm saying examine what the formal dx. will change and what you can do anyway while you wait. I think you'll feel better taking those steps now.

Our wait was a year too. That said, we did find private assessors (some who specialized in the high functioning range) that had much shorter waits and were as good or better I felt.

Don't be surprised if they actually assess for pdd-nos at his age. Many won't dx. aspie until 6 or 7.

[jenniet]

Linda on the move- I just started reading The Out of Sync Child yesterday!  My ds seems to have more than just sensory issues for example, he takes everything very literally, was a delayed talker and repeats phrases word for word from books and television (echolalia?).  He also just had a basic kindergarten assessment at his preschool which showed him scoring well on concepts but scoring very poorly on gross and fine motor skills.  Also, he doesn't seem to read the emotions of other people well.  He gets annoyed by the sound when other kids cry but doesn't seem to get that they are in distress.  He will see a sad or scary scene in a movie and not react to it.  I am not familiar with evaluations but I am glad they look at many different factors.  My son has a November birthday so he is eligible for kindergarten next year but depending on his test results we might think about holding him back on more year. The problem is he is in a pre-k program now that cannot be repeated so we would have to find another pre-school program and he would be with a whole new group of children.  

sbgrace-  Thank you! You are right, although my ds has improved a lot off of gluten, when I mentioned this to a friend today she (gently) pointed out that my ds is still having a lot of noticeable issues.  In regards to the insurance issue, wow, I assumed insurance would pay for therapies but I don't really have any idea.  We are in NY state.  Someone else mentioned the PDD-NOS as well, thank you though, I hadn't realized Asperger's wasn't usually diagnosed until a child was older.  (Can you tell this is all so new to us and a bit overwhelming? I can't even imagine what it has been like for my ds.)  

[beachcomber]

Originally Posted by Emmeline II 

Originally Posted by jenniet 

Dh and I have worried about our oldest ds on and off since he was about 12 months old.  We have always pushed our worries aside until recently.  Just before the holidays, all of our son's issues came to a head (he turned four in Nov.) and we no longer have doubts that something is amiss.  After lots of reading we really believe our son may have Asperger's Syndrome.  I feel an extreme urgency to get him diagnosed but the earliest appointment for the developmental pediatrician isn't until the end of May!!!!!   We have an appointment with our local school district for an evaluation in mid-Feb. but my understanding is that they won't give us a diagnosis.  Any advice?  I feel very, very guilty that we didn't address this sooner.  :(  

P.S.-  Our reg. ped. referred us to a dev. ped. but didn't think our son is on the autism spectrum because he sometimes makes eye contact and can carry on a conversation.  I disagree...

Then your regular ped doesn't understand Asperger's. I'd take that appointment, it's a relatively short wait; ours was a 9 month wait (it's next month). In the mean time you could consult a psychologist/psychiatrist that is experienced in this diagnosis, or seek out a therapist (CBT) to treat the symptoms without/pending a diagnosis.

http://www.ninds.nih.gov/disorders/asperger/detail_asperger.htm#115353080

Sensory Processing Disorder

I know it sounds hard but May isn't that far off. As for yoru regular ped, get a new one. Not only do they not understand Asperger's, they don't understand the Autism Spectrum at all. My DD has Autism Disorder (just turned 5) and she makes great eye contact, carries on conversations and has a sense of humor. Autism doesn't mean your kid is Rain Man. Sheesh! Doctors should know better than that!

Other professionals you can consult are an Occupational Therapist and a Speech Language Pathologist. If you're having any issues around DS's behavior, you can also try a Behavior Consultant or Behavior Analyst. They may not be able to give you an official diagnosis but they can get to work on the problems your DS is beset with currently.

Hugs to you, Mama. You didn't wait "too long".Don't beat yourself up. We knew something was not quite right with DD from 18 months but people (and that includes our GP, darn it) kept telling us she was just shy, cautious, etc. She hit her milestones but always at the outside edge of the range. So the things we came to docs with got brushed off as us being overly concerned. Bah. If she was a 2nd child, I'd have figured it out so much sooner. My 19 month DS is miles ahead of where she was at the same age. It's scary.
 

[Emmeline II]

Originally Posted by beachcomber 

Originally Posted by jenniet 

P.S.-  Our reg. ped. referred us to a dev. ped. but didn't think our son is on the autism spectrum because he sometimes makes eye contact and can carry on a conversation.  I disagree...

I know it sounds hard but May isn't that far off. As for yoru regular ped, get a new one. Not only do they not understand Asperger's, they don't understand the Autism Spectrum at all. My DD has Autism Disorder (just turned 5) and she makes great eye contact, carries on conversations and has a sense of humor. Autism doesn't mean your kid is Rain Man. Sheesh! Doctors should know better than that!

Other professionals you can consult are an Occupational Therapist and a Speech Language Pathologist. If you're having any issues around DS's behavior, you can also try a Behavior Consultant or Behavior Analyst. They may not be able to give you an official diagnosis but they can get to work on the problems your DS is beset with currently.

Hugs to you, Mama. You didn't wait "too long".Don't beat yourself up. We knew something was not quite right with DD from 18 months but people (and that includes our GP, darn it) kept telling us she was just shy, cautious, etc. She hit her milestones but always at the outside edge of the range. So the things we came to docs with got brushed off as us being overly concerned. Bah. If she was a 2nd child, I'd have figured it out so much sooner. My 19 month DS is miles ahead of where she was at the same age. It's scary.
 

Ds was halfway through K before we went to our first therapist, so starting in pre-k is an improvement on that! The younger they are the harder it can be to differentiate between variations of normal and concerning behaviors. Ds' milestones were hit on an "average to latter end of normal" timetable, except for weight and height (95% through 5yrs), though he seemed advanced intellectually--that can throw off one's perception as well. Ds makes eye contact, he just doesn't sustain it as long as a typical child; this has improved with age/therapy/and or the ADHD medication. He can also carry on a conversation though they tend to be lopsided in his favor. The OT that evaluated ds first brought up Aspergers; his psychiatrist thinks it's a possibility but hasn't made a diagnosis yet. I'm hoping to get a more definitive opinion from the hospital.

[Linda on the move]

Originally Posted by sbgrace 

The school probably won't do anything different based on the dx anyway--at least here they don't--they go by their own assessment of school functioning and needed accomodations. i guess I'm saying examine what the formal dx. will change and what you can do anyway while you wait. I think you'll feel better taking those steps now.
 

Our experience with our DD was that a medical dx on the autism spectrum was necessary for the accommodations she needed at school. May be it's an age thing? Preschool vs big kid school?

I would totally recommend getting an eval., but I suggest relaxing about it. The doctor may no say anything definitive at that appointmennt, and may order more evaluations by other specialist, or may say lovely vague things like "autism like behaviors."

Originally Posted by jenniet 

Linda on the move- I just started reading The Out of Sync Child yesterday!  My ds seems to have more than just sensory issues for example, ....  . 

I believe you that he has lots more going on, but working on the sensory piece is really big for my DD. Her dx was PPD-NOS when she was younger, but is now Asperger's. She's 14. She's very bright, but on the spectrum for sure. Her ability to be functional as a human being is largely determined by her sensory issues. she really needs to get the *right* kind of sensory input every day or she falls apart.

We still think carefully about where to take her and have an exit plan. We plan vacations around it. We skip a lot of things that are fun for other families BUT we still have fun as a family. She's really happy right now.

She's in a school she likes, and we've found some volunteer projects she can be a part of it. She's doing really well. (I'm sharing this because I've been where you are, and I was pretty freaked out. There really is hope. Even though your little guy is different, he can still be happy.)

[beachcomber]

The book "Out of Sync Child" is what got us started down the path of figuring out DD's AD. She definitely had the sensory stuff, then I noticed that she was lagging behind her peers with gross and fine motor. I realized that she has proprioception and vestibular deficits as well. She was one of those babies/toddlers who HATED being put upside down or tossed in the air. Once I realized it was more than SPD I began looking for a causal factor. We went through a number of suggestions including Delayed Coordination Disorder, Selective Mutism, Auditory Processing Impairment, and more. Finally, I pushed my GP to request an official Autism assessment from the body that does those here in BC. I didn't think she'd come up on the Spectrum, but she did.

[shelbean91]

I called last January for an eval for my ds2.  The earliest appt was in JUNE - and that was with a physician's assistant.  She asked all the questions, did the observations, etc., and gave me huge packets to fill out for me and his teacher.  Now, this was in JUNE, and they wouldn't schedule the next appointment until I got the paperwork back.  Because school didn't start until August, I couldn't even schedule an appt until September when they received the paperwork.  The earliest appt they had was March.  Ds already qualifed for stuff at school b/c an educational dx is different from a medical dx - and his education was definitely impacted.  I called to get on the cancelation list, b/c even with our interventions, he was having meltdowns left and right.  We managed to get bumped up until today - when he was officially (and easily) dx'd with autism.  Not aspergers, not PDD-NOS, but autism.  I had no doubt, despite the fact he's SO different from my ds1, who was dx'd when he was 2 1/2.

Your ped is totally wrong - both of my boys make eye contact and are affectionate.  They both have autism.  If there were speech delays, you won't get an asperger's dx, as aspergers doesn't have speech delay, from my understanding.  However, at age 4, you may not get a full autism dx, either.  The behaviors that may be in the range of normal at 4 are no longer at 6.  I think if I had my ds2 eval'd when he was 4, he wouldn't have been dx'd, but I'm not sure.  He had speech delays, he had sensory issues, etc.

If you suspect autism, try to get therapies and strategies, as a dx doesn't really change much.  We might be trying a med to help some of the symptoms (and I'm VERY much a person who thinks of meds as a last resort) and the official dx allows us to continue getting therapies we've been getting through the state.  (Age 3-6 qualify for services without an official dx, 6 and up require one). 

So, my son was dx'd today.  I knew he would.  He's the same as he was yesterday.  The only thing that's different is now I can say 'he has autism' when explaining some strange behaviors instead of saying 'he's got sensory issues'.  Even though I knew he'd be dx'd, and I wanted him to be dx'd, I'm still .....uneasy(?)....sad....bothered.....relieved...... not sure what word I'm looking for.

Take the appointment.  Get the eval.  Get the answers.  Go from there.  That's about all you can do and keep someone close to listen - having someone to talk to is so important.

[Linda on the move]

Originally Posted by shelbean91 

 If there were speech delays, you won't get an asperger's dx, as aspergers doesn't have speech delay, from my understanding.

It depends. An Asperger's dx doesn't account for speech delays, but kids with aspergers can have speech delays if they are caused by other conditions. For example, my DD had chronic fluid in her ears (eventually had tubes) but because of that didn't hear properly for the first few years of her life. She had speech delays, but because they are accounted for in a different way, she is still "eligible" for the Asperger's dx.

Diagnosing these kinds of conditions is complex. You really can't do it with a check list. There are just so many factors that need to be weighed by someone with a lot of education and experience.
 

[shelbean91]

Originally Posted by Linda on the move 

Originally Posted by shelbean91 

 If there were speech delays, you won't get an asperger's dx, as aspergers doesn't have speech delay, from my understanding.

It depends. An Asperger's dx doesn't account for speech delays, but kids with aspergers can have speech delays if they are caused by other conditions. For example, my DD had chronic fluid in her ears (eventually had tubes) but because of that didn't hear properly for the first few years of her life. She had speech delays, but because they are accounted for in a different way, she is still "eligible" for the Asperger's dx.

Diagnosing these kinds of conditions is complex. You really can't do it with a check list. There are just so many factors that need to be weighed by someone with a lot of education and experience.
 

That's true - with my ds1, we did need to do a hearing test to rule out hearing loss.  Ds2 has also had his hearing tested.  If speech delays are from something else, like hearing loss - that's included toward an autism dx.  I was worried ds2 would get an asperger's dx, because here - that gets NO services, but autism dx gives us therapy, habilitation, and respite.  I was told that b/c there was a speech delay and some delayed milestones, that would make him 'eligible' for the autism dx.

 

[rainsmom]

I dont want to hijack the thread - but just wondering about pros and cons to getting a diagnosis for Aspergers?  

[Emmeline II]

Originally Posted by rainsmom 

I dont want to hijack the thread - but just wondering about pros and cons to getting a diagnosis for Aspergers?  

I can't think of any inherent cons for you to have a diagnosis. Even if no one else knows, it can be helpful to have a professional evaluation of symptoms. Having a diagnosis can be helpful, even necessary, for getting accommodations at school; it can give you credibility in that "mom" isn't just making excuses (an issue for us as prior to diagnosis ds was just the weird problem child at school last year) and validation for your own suspicions; and sometimes it just makes communication easier-- instead of trying to list and describe symptoms each time you have "the diagnosis". Though every person is an individual within that diagnosis, it provides a starting point. We had difficulty getting ds treated appropriately (therapy wise) without a diagnosis.

[Linda on the move]

Originally Posted by rainsmom 

I dont want to hijack the thread - but just wondering about pros and cons to getting a diagnosis for Aspergers?  

This question assumes that the child has Aspergers and that you are just getting an official validation for it. Without getting a good evaluation, the parent would be dxing their own child based on what they read on the internet. That is just such a bad idea. Your question would be more accurate if you worded it "just wondering about the pros and cons of getting an evaluation to find out what is really on with a child?"

A con of getting a solid dx is that the parent can no longer live in denial.

[beachcomber]

Originally Posted by rainsmom 

I dont want to hijack the thread - but just wondering about pros and cons to getting a diagnosis for Aspergers?  

It depends on how you feel about your child carrying a label into the education system, etc. In some places a label is not going to negatively affect your child and will actually guarantee supports and accommodations.