I am the mom of a 13-year-old boy who was diagnosed as learning disabled in Grade 2. After years of testing, we finally narrowed his problem down to one of Non-Verbal Learning Disability and possibly PDDs (Autism spectrum disorders - specifically Asperger’s) Asperger’s has since been ruled out.
However, around the time he was diagnosed as LD, he also began to experience auditory hallucinations which over time have developed into full-blown psychosis. While the doctors are reluctant to diagnose Child Onset Schizophrenia opting instead for a Pyschosis NOS (not otherwise specified) diagnosis, because the COS is so often misdiagnosed.
Our reason for posting on this bulletin board is two-fold. First of all COS (Child Onset Schizophrenia) is an extremely rare condition (only 1 in 40,000 people have developed this serious illness). Because of the rarity of the condition, it is difficult to touch base with other parents who have similar experiences. We are looking for others who are farther along with this illness than we are, and would like to talk to find out if the course of action we are taking in terms of parenting, professional treatment and lifestyle changes are correct or if we’re missing anything we could be doing for him.
Secondly, I wanted to say to other parents whose child seems to have ever changing and worsening L.D. symptoms to be vigilent.
While this condition is VERY rare, it is out there and kids with Asperger’s and some say also NLD can be at risk for developing the disease.
While it is very difficult to intervene early because little is known about the promordal symptoms (those symptoms that point towards the disease developing but are not yet the full- blown manifestation of the disease) and there is no consensus on how to diagnose or treat — and diagnosis is tricky. It is good to be armed as a parent with the information that this is possible.
Because we were alerted to the possibility, we knew early what questions to ask and were able to encourage our caregivers to ask questions and run tests which might not otherwise have been pursued. While this hasn’t made the increasingly severe “breaks” any easier to deal with, it has ensured we’ve accessed care earlier and with a full set of testing already completed, which has helped to ensure that there have not been delays in his care.
While every child is different, and every experience of L.D. is different, it’s important that parents KNOW THEIR CHILD AND BE HIS OR HER BEST ADVOCATE. Especially when dealing with lesser known L.D. types, it’s good to be well educated and informed, and to be a good educator of others.
And it’s important to keep believing in your child and to be in their corner, so they know who to trust. When things go terribly wrong, there is no substitute for that trust or for good communication with your child, and for knowledge of what is “normal” and “atypical’ of their particular condition.
While parents should not be alarmed at hearing Psychosis has a connection to LD (because it is rare), it is always good to be informed, in case, like us, you are one of the ones for who the 1% rarity is a 100% reality.
Celebrate your L.D. children — and don’t despair. There’s always reasons to give thanks and feel good about your child.
M.C.
Re: complications to NLD
Hello I am a psychologist who specializes in autistic spectrum disorders/ NVLD. I have to say that I have had many children with ASD report things like hearing voices, having imaginary friends, or feeling like they have “alternate selves or personalities”. None have turned out to actually have delusions or hallucinations, none are actually psychotic. Instead I m encountering children who are extremely concrete about themselves and seem to understand their own feelings and ideas- particularly negative ones they are distressed by- as somehow separate entities. Moreover, their ability to differentiate fantasy and reality is often not good- they can easily become quite immersed in fantasy. This is not the same as psychosis. Usually with treatment, they become better integrated, accepting these feelings or ideas as their own (or based on imagination), and then better able to cope with them. Certainly child psychosis exists, though rare, and I look to rule it in or out… but these kids are tricky to understand- it’s important to look closely at what may be underlying the behavior you see. I hope that your child was diagnosed by a clinician with extensive experience with ASD so there is no misinterpretation of your son’s behavior.
Dear MC,
Thanks for sharing your story. I am curious about if your son was on any medication prior to the beginning of the psychotic behavior? My son who is NLD-ish, also has a very active fantasy life. Our psychiatrist specifically didn’t want to try stimulant medications for the inattentive behaviors because he said some children like mine become psychotic … just curious if this was a factor with your child. Please keep us posted on his progress!
Karen