The search for answers... a son with issues.

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Hello all. I've been looking through the forum reading some of the threads and decided I would post my story. I guess I'm looking for encouragement, advice, or someone else's experience.

B is my 5 year old son who started kindergarten this year. Of note, he is the youngest in his class. He had 2 years of Head Start previously. During the orientation to Head Start- when he was 3 years old, it was noted that when he was called for his hearing test he would not stop doing the puzzle he was working on. Due to that and some information provided by me, he was referred to our Special Education District and given an IEP that focused on self help skills. There was a question of autism at the time, which I shrugged off as he was meeting his milestones.

I blamed myself at the time. He is the baby of the family with all other close family being considerably older. We made an effort to encourage him to do more things independently, and he did well. At the end of Head Start it was mutually decided that his IEP would be stopped.

He's always been very "quirky" in certain aspects... saving a certain color of M&M or only wanting to eat things in a group of 10. He had a blinking tic at age 3 that resolved when he was 4 and replaced by a vocal tick that is still ongoing. He wouldn't eat with a spoon until age 4 because he didn't want to get messy, and still struggles with that today. He never showed much care for anyone except for immediate family, but he never saw them much either. Never did well at team sports at all. Picks and picks his lips, skin, and nose. Extremely picky eater. Loves to pick up any small object off the ground and loves to take things apart and keep the pieces.

When kindergarten came around B started having issues with focusing. Certainly he's always had issues with focusing, but they were never too big of an issue. The school psychologist evaluated him and suspected ADHD. An outside psychologist diagnosed the ADHD, and he was started on Adderall. While it helped some of his focusing issues it increased is obsessive tendencies. When I told the pediatrician about this he thought he needed a higher prescription. Mother of all bad ideas. B would never sit on the rug during rug time and had is own chair, but now he would sit cross legged and have real issues with anyone touching him or his chair. Seeing him respond (or not respond) to other kids at birthday parties was an eye opener. He would want to play tag, but when going to get tagged he would wave his hands in front of him not wanting anyone in his space. His poor sleeping habits from before became much worse.

So we took him down on his dosage and things are better, but not right. The school isn't budging much on restarting his IEP because he doesn't have a need for special education (academically he is doing extremely well).

And now... a new psychologist, out of town, that focuses more on autism spectrum disorders. We have filled out the questionnaires and will have an appt next week for evaluation.

I am almost certain he will be diagnosed on the autism spectrum. Then what? Do I go back and try to get intervention from the school? Should I do it before the end of the school year or just ride this one out. I'm so tired of the e-mails from the teacher. I know he has issues, I know they can be worked with (I do not medicate him on non school days), all these appointments take time to schedule.

Sorry, that was long, and not even half the story.

Based on what you have stated, I don't see why you are considering an autism spectrum disorder at the moment. Tics, skin picking, and not wanting anyone to touch him or his chair, are obsessive compulsive traits and could be a precursor to OCD or Tourette's Syndrome. Or they could just remain obsessive compulsive traits until the DSM-V comes out, in which there will be a specific category for such things.

Is there a reason he's not sleeping well? Is he experiencing night time anxiety or nightmares for some reason?

Limited empathy (with non-family members, according to OP), physical clumsiness/lack of sports ability, and aversion to touch are all quite classic Autism symptoms.

I have very much considered OCD and Tourette's. In fact, I believe he may have Tourette's also. The signs/symptoms he has though, when autism and OCD are put together, point more towards an autism spectrum disorder. Today he asked "Why do people smile at me when they see me?" He currently has a preoccupation with death. Wondering when he or others are going to die, how, what will happen, etc. He even told the hairdresser one day she was going to die.

I'm a nurse in a non mental health field (although we can get a comorbidity with any patient) and hate when pts or their family play WebMD and now I'm doing the same thing. I'm not trying to do the job of the psychologist by diagnosing him; it's just a gut feeling. A "ah-ha" moment if you will, after the second psychologist suggested it as a possible diagnosis after our initial evaluation. Actually the psychologist said point blank that he saw signs of autism in B during that initial interview. I am pretty sure that the ADHD diagnosis is off target, and am wondering about stopping his medication completely, but am waiting for the advice of the other psychologist first.

B has never slept well. Never. To the point where he co-slept for several years so I could make sure if he left his bed I was aware. I think he has anxiety, but I don't know if that's what keeps him up at night or not. When asked, he simply says he's not tired.

I am to this day bad about staying up for days on end, I get so interested in things online.
I collapsed shaking into bed last Monday after 5 days of no sleep.
This led to a mis-diagnosis of Bipolar disorder, since insomnia is the primary way the manic phase of one type (2?) manifests.

Sleep disorders are, as I understand it, common on the spectrum.

OCD is an anxiety disorder. Chronic insomnia is also a sign of anxiety. Adderall is a stimulant that increases focus but also increases anxiety. My older son with high functioning classic autism tried Adderall for 3 days and then we called the doctor and discontinued it because he was unable to calm down on it--motor always running. Then we tried Ritalin, another stimulant, for suspected comorbid ADHD. The Ritalin just caused more severe, more frequent, and more prolonged meltdowns/anxiety attacks. According to my sons' child psychiatrist, anxiety is extremely common in kids on the spectrum. Also, from talking to a bunch of different moms in person and on the net, I know that a lot of kids on the spectrum with "high anxiety" (particularly young low-functioners) do extremely poorly on stimulants.

My older son (aged 7, mainstreamed with inclusion support and help at home) currently takes Prozac (24 mg/day) for selective mutism (a severe comorbid anxiety disorder where the child is so nervous in social situations that he cannot talk and appears mute; a third of kids with selective mutism also have other speech issues, compounding the situation). He also takes .1 mg of Clonidine at night. Prozac (fluoxetine) has a very high success rate--about 76%, according to the research with which I'm familiar--with selective mutism.

My younger son on the spectrum has actually been diagnosed with OCD, chronic insomnia, and encopresis (where a child above the developmental age of four poops in inappropriate places--underwear, on the floor, rubs it on the wall, etc.--due to psychiactric [not developmental or physical] reasons.) All of these issues are related to anxiety. (He also has some sensory issues and mild speech issues). He also takes Prozac for his severe anxiety issues (24 mg/day) and .1 mg of Clonidine at night.

Whenever I've given my younger son Sudafed (a cold medicine containing a stimulant) for sinus conjestion, he has always had issues--cannot seem to stop walking and talking and really wound up.

My sons have both shown vast improvement on the Prozac and Clonidine medication regiments--selective mutism under control, OCD mostly under control, and no more sleep issues at night. Both kids started meds at just under age 4. My older son first got his prescription for Prozac from a pediatric neurologist and he continued on the med when we started going to the child psychiatrist because it was cheaper and more convenient for medication management.

On a side note, I personally take Aderall myself, and it does make me feel more alert. I used to have to drink coffee all of the time, and now I don't anymore. However, I am a mature, high-functioning Aspie with a whole lot less anxiety and a whole lot more self-control than my kids. (I am also on Prozac, too, which helps me to feel calmer with everything going on with my kids without making me feeel "drugged.")

Anyway, you might want to check out the link the the "therapy" page from my free website. It will lead you to information on types of therapy available, medication, and comorbid conditions.

To answer your original question, if you do get an ASd diagnosis then, yes, you will want a new IEP. The protocol is different for ASD than for ADD, and you will want the right accommodations and supports in place,

Many AS kids do well when you control their environments, often to the point of not needing medication, but it depends on the child. We have tons of resources on this site if you browse the stickies up at the top.

I, personally, believe in mommy's intuition on this issue. None of us can know your son from posts on a message board. Hopefully you will luck into good professionals who understand ASD. Then come here for all the nuances and tricks the professionals haven't figured out yet.

If there are behavioral issues they are dealing with at the school level, there is some impact on his education. He is already identified as a child with a disability (ADHD), which qualifies him for 504 protections. The team (with you) may determine he requires accommodations to access his education (which it sounds like he might), therefore a 504 plan would be warranted. If he is progressing academically and the entire team (again, this includes you) doesn't feel he needs special education, he wouldn't necessarily qualify for IDEA with an IEP, regardless of what he is diagnosed with. At the very least, you can request a preliminary meeting to discuss things and the school is required to hold that meeting.

Good luck with the new psychologist. I would definitely watch the meds. It does sound like he has plenty of anxiety issues, and stimulant medication is going to increase those issues.

Visit Wrightslaw website and look for info on behavioral support. Save all those notes from the teacher, and keep a journal of issues she raises verbally. Academically he may be progressing ok, but you may be able to build a case for him having an IEP and Behavior Support Plan to address the issues the teacher is complaining about.

Autism Speaks has a "first 100 days" kit for right after diagnosis that I think is very helpful: http://www.autismspeaks.org/family-serv ... 00-day-kit At the very beginning, it lists and explains the diagnostic criterion, which may be helpful for you to review.

OCD, Tourette's, and tic-like behaviors are common co-morbids with autism (as is ADHD.) My son and I have some of these behaviors (I laughed at the M&Ms bit, I like to eat them in pairs and the ^%$# mini packs come in odd numbers!) Skin picking, etc, can also be because of sensory needs which are just now being added to the autism diagnostic criterion.

Many of us here have gone through a number of diagnoses for our children and a whole range of acronyms. For me, the diagnosis of autism started to make sense to me when we found that my son did much better if we acted as though he had Asperger's syndrome (not meaning something awful like we treated him as though he was a "problem," but that we used the standard interventions and parenting best practices for a child on the autism spectrum. All our lives got better - his and ours.)

Just to direct you to some resources parents have found helpful here: a poster wrote this ebook: www.asdstuff.com

The stickies at the top of this board have a lot of useful information and a place to start off if you have questions. I love being able to crowdsource answers to particular problems here, and I'd recommend posting any particular issues you might have; there's a wealth of experience here that I value, both from parents and from individuals with autism.