Update on my 6 yo son (neurologist and IEP meeting)

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Hello all,

I am still new here, I posted a while ago when the psychiatrist dxed my son as ADHD, PDDNOS, OCPD and GAD.

I decided to get a second opinion and not place him on any meds that the psychiatrist recommended because when I showed him a video of my son stimming he said that he thought my son was having seizures. So we ended up at the neurologist today for an EEG.

The EEG came back normal, I showed the Neurologist the video and he said that it appears to be stereotypic movements and not a tic?

He said that my son shows high signs of ADD but he said he was reluctant to place him "on the spectrum" because his signs are so mild. Which leaves me so confused because his teacher, the school psychologist and the speech therapist all say that he has classic signs of Aspergers. The doctor said that he understands this is the first time meeting him and that he is obviously not going to see how Joe acts socially around other kids. He said that he was not comfortable with an Aspergers diagnosis because Joe IS able to hold a conversation, which is true but is very hard for Joe if it is someone he does not know and he will hardly ever start a conversation on his own. He again recommended Focalin XR and Clonidine for the ADD. The doc thinks that the ADD is appearing with some "quirks" of a spectrum disorder. He wants to see if the "quirks" get any better with the ADD meds.

I was wondering if really it matters too much if the school dx him ASD and the doctor puts him as ADD?

I just get so confused because every doctor tells me the samething, yes it is there but not enough.

Thanks!! !

update: I just had the Neurologist fax over a letter with the Diagnosis and it reads: Aperger's Syndrome, ADHD and involuntary movements.

So I guess this is a good thing for us???

Now what...

Thanks guys!! !

[Hugs] It can be overwhelming at first. Just try to get one piece in place at a time, and eventually a plan to help your son will come together.

I'd start by reading the OASIS Guide to Asperger's Syndrome[/u ] and/or [u]The Complete Guide to Asperger's Syndrome by Tony Attwood. Also Parenting Your Asperger's Child.

Here's a link that talks about what to do in the first 100 days after a diagnosis:
100 day kit for Aspergers and High-Functioning Autism

Find a local autism support group and meet some other parents. They'll have recommendations on how to navigate the school system and what private therapists are good.

What country are you in? In the US, if you don't already have an IEP, make a written request for an "multi-disciplinary evaluation in all areas of suspected disability" to the school's resource teacher (you can find example letters by searching "initial IEP evaluation letter"). I might suggest going for an OT assessment from someone trained in sensory integration, and a speech and language assessment from someone who has worked with a lot of ASD kids, then give the reports to the IEP team and use them to build a case for OT and speech services from the school. From Emotions to Advocacy and Wrightslaw website are good resources for IEP's in the US.

Check your insurance coverage -- in some states, like California, it is mandated that the insurer cover a certain number of hours of private speech and OT for anyone with an autism diagnosis (which Aspergers is).

Good luck!

Thank you so much Zette!

He already has an IEP In place for speech therapy due to vocal cord nodules, so we just had a meeting on Thursday to re-evaluatehis needs. The ESE coordinator and the teachers are the ones that really were pushing for a spectrum diagnosis only because they know him so well. I will find out about speech and OT through my insurance. I am in the South Florida area.

I will see if I can get a copy of the books you mentioned. It is something that I have known in my heart for years but it has been so hard to get anyone else to see it, you know what I mean? Because it is so mild, but even mild is still there!!

Thanks so much!!

I think it matters less what words the doc uses than what you DO about it. How old is you child? When a child is young, ASD and ADD can look a lot alike. The thing is, while meds MIGHT help a child with ADD, there are no meds known to help kids with ASD (only with co-morbid conditions). I don't think, and someone PLEASE correct me if I am wrong, that the DSM puts ADD as part of the autism spectrum so I'd be a little skeptical about a doc that uses those 2 terms interchangably, esp when he is prescribing meds. But that's just me, I definitely come down on the conservative side when it comes to medicating children. If it really is ASD, then there are many behavioral avenues to work on that might prove more useful in the long run.

Thank you for your reply. He just turned six in October and I am going to do a lot of reading as I am so new to this area and I feel a little over my head. His teacher really is a lot of help and also wants him tested for gifted.. I just want whatever is best for my little dude...

thanks!

I'm glad you got a second opinion. ADD and ASD seem to be paired together often. I hope the meds work well for him!

My kiddo also has "tic" like movements, especially when he is overwhelmed or tired.

Thank you SC. This was really like my 5th opinion in the last 3 years but the most recent in the past month. I am hoping that now we are on the right track!!

Thanks!

Keep in mind that there's a difference between an educational "diagnosis" vs a medical one too. Use what works. If the school does their evaluation and he qualifies as ASD, go with it. There are some real characteristic things that the school evaluations will show too, that the psychiatrist/neurologist wouldn't necessarily look at, like pragmatic/receptive language skills, splinter skills on IQ tests, memory and processing issues, executive dysfunction......... Some of these things can also look a lot like ADD (not looking like your paying attention, when you really are, or not being able to remember what someone just said to you a few seconds before) but are really very different.

As far as the involuntary movements part, do a google search for "ASD stimming". It's something perfectly natural but seems to be very misunderstood, especially by teachers.

When we saw a psychiatrist (pre-assessment) he didn't even suggest ASD and our very astute school psychologist called me after the first meeting with Julian, when he scored 97th percentile on perceptive reasoning and 3rd percentile for memory. Our guy is also incredibly high functioning but when you know what to look for, it's pretty obvious. With the right accommodations in place (and followed correctly) things eventually fall into place. He's 10 and in 5th grade now - he was assessed at 8, in third grade.

In my own personal experience, I've decided in talking with several psychologists/psychiatrists and our own Pediatrician, that for us, getting that medical diagnosis would just be redundant. We already get the services that we need through the school system or insurance (or just being creative). The most that the Psychiatrist we did talk to was to offer a brochure for medication and tell us to call if we ever wanted to try meds, but that otherwise we didn't have to make any more appointments.

Since you're in S. Florida, you need to look up Surfers for Autism as well. Great group of people. We've done it for two years in a row, as well as a surf camp put on by a great group of volunteers for SFA for two weeks this summer. No better OT or social skills class in the world. The first event of the season is in April - they don't have their schedule up for next summer yet though.

You also might want to look up FAU/CARD, which is the Center for Autism and Related Disabilities. They are a great resource for ideas for school accommodations. They have clinicians who can do direct teacher training and do classroom observations to suggest individual ideas for IEP accommodations. They offer services for free.

For autism support groups, there are a bunch around. There is a newly regrouped Autism Society group of Palm Beach County - the Broward county group is much more active. I don't know of any by name, outside this immediate area of northern PB county, but they are around.

Sorry I didn't post links - I have to get ready for work in a few minutes and I'm trying to type fast.

Recommended reading - definitely Tony Attwood. There is a "Recommended Reading" sticky at the top of this forum with a lot of other recommendations. One is a book, written by one of our own WP members, called _Congratulations! Your Child is Strange_, available here: http://www.asdstuff.com/ I put this one on my Kindle and it hasn't left yet.

Last of all, let your kid know that it's OK, even good, to be different. (hugs)

Elizabeth

Thank you Elizabeth. I appreciate your response so very much!! I am def going to be looking into the books that you suggested. The neurologist did give me a brochure for CARD, I will try giving them a call tomorrow as I am off of work.

The DSM does not put ADD and ASD together. Two completely different things. Labels..bah...only helpful if it means the kid gets the supports he needs to foster success and joy and happiness. If a kid will qualify for specialised funding as an adult or during school or specialised supports like social skill training in classroom setting or some other support, then the label of ASD is great.

Regardless, many of us (some in certain professions than others) display ASD type tendencies. That is just fine. Same for kids. Kid may not be labelled ASD according to DSM-IV criteria but has sensory, or social or academic needs. Address those needs. For example...kid is 6 and has no friends to play with at recess. Kid walks the field alone, or hangs with adult. Kid never knows how to or when to ask to play. Teach him. When kids are playing you can say this (Give a script). When a kid is alone in sandbox and you want to join in - script. Scripts great to begin with and may be needed for years....hope is always that script transfers to new settings.

Read Michelle Garcia-Winner, Atwood, research social skills training programs. If in a city there must be some type of support child care arrangement/play group for kids with ASD or ASD tendencies. If not, join the ASD parent group and get something going. Good luck.

You may want to watch this lecture

http://www.wrongplanet.net/postt179333.html

Current research suggests that autism is at the centre of a triad of impairments and each of the three strands is a spectrum, a sliding scale of severity.

If someone is only displaying severe symptoms of one or two of the strands when a diagnosis is made it is easy to diagnose ADD instead of ASD.

Agreed.

Momtojoejoe, I'd be reluctant to put your son on medication at this age, and especially before you've reached a complete understanding or consensus on his issues, unless you are desperate for a way to get him successfully through a day. Which may be the case, but I didn't pick that up in your post. A little ADD and a few tics may take extra work from everyone around your son, but they aren't likely to be wholesale stopping his progress. Once you medicate, you start masking what is really going on.

All these labels are subjective. You've been doing your reading, what do YOU believe? No one knows your child like you do; what instinctively sits right? I'll tell you, I was shocked the first time I heard my son might be on the spectrum, but the more I read, the more I realized that it explained everything. The more I read, the more I knew it was right. Mommy instinct is pretty powerful; let that be the final guide.