My 7Y/o Son's Diagnosis.

I have a daughter with Asperger's Syndrome which is also on the autism spectrum. It does sound like PDD-NOS may fit your son, and I'm wondering why you are not happy with the diagnosis. It hasn't changed who your son is from the moment before you got the label. He clearly has learning, behavior and sensory issues, and the most important reason for the label is to get him appropriate services in school, and any therapies he may need. I'm a child clinical psychologist, and have dealt with these questions with many families. Have you gotten him an IEP? does he have supports and services in the school? Have you considered getting an advocate to help you negotiate with the school? feel free to write to me if you have more questions.

If three separate doctors have diagnosed your child as being on the spectrum, then it may well be true. Symptoms can vary wildly from child to child so comparing your son to others on the spectrum may not prove anything.

If you disagree with the diagnosis then see another doctor. But you may want to consider the diagnosis and do some research into it so you are better "armed" when you see the next specialist.

Good Luck
God Bless

from what I hear it sounds like PDDNOS but I'm not a doctor or any sort of specialist. My son has PDDNOS. He has great speech, does great in school and is in many ways a typical kid. But... he has limited eye contact, repetitive behavior (gets stuck on topics a lot and rarely plays with many toys outside of a select few), he flaps (which I don't think is habit). So, from that they have similar behaviors that would make me think your kiddo does too.

But.. as you say, you are with him 24/7. Do more research on PDDNOS and see how many characteristics he fits. Do more research on mood disorders and see how many characteristics he fits. I kind of think if 3 separate professionals have diagnosed him then that must be what he has. I am again no doctor, so continue to talk about this with those professionals if you have concerns. Good luck!!!

My nephew who is 20 was diagnosed with pdd-nos years ago but his story is quite different: he is super intelligent and could read and tell time and draw with perspective at age 4. He saw a therapist when he was maybe 5-10 since his intellectual and emotional development was not in sink (he was very clingy to his mother, had temper tantrums about little things, even as a teenager still). Also, he was bored in school so he did not apply himself. He has had some violent outbursts, but is in a soccer club and works (at a low level job since he does not want or cannot apply himself) and has lots of friends.
But it seems everything is on a spectrum nowadays, so no 2 people with the same diagnosis are exactly the same (my daughter has dyslexia which is also a spectrum disorder). Since you say he has been diagnosed 3 x, does that mean 3 different neuro-psychologists? I guess it is always your prerogative to get another opinion, but if 3 different specialists think this is his diagnosis, maybe you need to read up on the variety of pdd-nos that is out there, and perhaps some end of the spectrum matches what your son has. I would also talk to these doctors about what path to take in life besides just medication.

It's very hard to comment on this without more information. Boys can be aggressive - it's part of their make up. You can't expect them to sit demurely like little girls, so school can be a challenge. I would want to know about two additional things that can play KEY roles in a child's behavior:

1. His diet (check for artificial colors/flavors, esp red #40, yellow #5, and blue - directly related to behavior problems - sugar, and caffeine).

2. Methods of discipline used in your home and how consistent they are.

Trust your gut. Many children are WAY overdiagnosed when the two above issues should be the first things analyzed before any medication (with questionable side effects in the long run) be administered. If you don't think it's right, evaluate these two areas, make changes if needed and then get a second opinion.

If this were one diagnosis, I could see doubting it, but by the time this same diagnosis is given three times, I think you would be better served by understanding his issues and getting all the support you can.

You may already know this, but the Not Otherwise Specified (NOS) diagnosis means that he is displaying several (a certain number) of the signs of autism but not enough of them to gain the label Autistic. Some of the symptoms may be mild and some may be more intense, but he is displaying enough of them for the evaluators to come to this same conclusion three times.

The label may or may not be important, although services are made available based on the diagnosis, so I would, again, take advantage of all services available to your son.

As a mom whose son got the same diagnosis, I believe it's just a catch bucket when they don't know where else to put the child. Forget the label and focus on helping with symptoms. The biggest concern with the label is does it get the services your son needs to help?

Also, because of the mood issues, have you had your child checked for traumatic brain injury? My son has auditory processing disorder and been called autistic-like since he was 2. But he never quite fit that autism diagnosis. He is now almost 9 and a few months ago had a QEEG brain map done. This told us for sure he is not autistic not ADHD, and he actually has mild traumatic brain injury. The injury has caused his auditory issues, attention issues, as well as sensory issues that can cause emotional outbursts. We've begun treating with neurofeedback which is helping tremendously. We've also done several listening and movement therapies over the past 3 years which have also helped a lot.

Treat symptoms, not a label. You son can improve, but it takes time, patience and persistence!

Blessings,
B.

Hi Juanita, has the dx PPD-NOS come from a developmental pediatrtian or psychiatrist?

Since he is in 2nd grade (?), is he in a special program at school?

Does he have OT or PT?

Has the Abilify helped him?

The two behaviors you mention here can be pretty common traits of ASD (echoalia and patting his ears) but doesn't HAVE to be.

Perhaps you'd like to have him evaluated by a different specialist?

Whatever his dx, I hope you will take full advantage of all the services available to help your son!

:)

Since he has been diagnosed with this 3 times I'm wondering if you brought up your doubts and concerns when he was diagnosed the 2nd and 3rd time? Because you're not a doctor you need to trust them, but it certainly doesn't mean you can't question them. You are your son's number 1 advocate, you need to be the one to fight for him to help him as best he can be helped.

Remember that not all children will exhibit the same signs, the two main characteristics of the disorder are difficulties with social interaction skills and communication. Treatment is a very intensive, comprehensive undertaking that involves the child's entire family and a team of professionals. So my advice to you is to 1) see how the Abilify works on his aggression, the prescribing doctor will need to know specifically, 2) and to become an expert on PPD-NOS, read everything you can, keep a journal with how his day is going, his behaviors, and questions as they arise, and talk to other parents of children with the same diagnosis, so that when you deal with doctors, therapists, etc. you are armed with sound information and everyone can be on the same page.

Here's some information to get you started:
http://en.wikipedia.org/wiki/PDD-NOS
http://www.autismspeaks.org/what-autism/pdd-nos
http://www.nationalautismresources.com/autismsymptoms.html
http://www.autism-help.org/pdd-nos-overview-autism.htm

And here is "Cutting Through The Psychobabble:
Diagnosing Autism And PDD-NOS Per The DSM-IV In Layman's Terms"
http://www.bbbautism.com/diagnostics_psychobabble.htm
It will hopefully help you understand how your son's diagnosis was made.

Juanita, find a support groups for parents whose children have the same diagnosis as your son, in a group setting or online. No one expects you to deal with this all on your own and you don't have to. There are others who are where you're at or have been there and can help.