Late Onset Autism or Childhood Disintegrative Disorder?

When my little boy lost his ability to speak at the age of 6 years old, becoming withdrawn within 2 weeks, unable to function at school, being overwhelmed in most public settings, he received, plugged out of the air, the magical diagnosis of autism. This was based on 10 min observation in school conducted by an autism expert. That is all what he received. No investigations were made. My son was autistic and an alternative school placement with other autistic children was given in compensation. The novel symptoms he presented with, his great health fragility, the sudden development of his epilepsy, which progressively worsened over the years, his gut problems, his immune impairment, nothing received any kind of attention, unless I forcefully requested for some tests to be done, mostly unsuccessfully. We had a brand new label and there was no question to ask about this. Asking questions was seen as being a difficult parent.

The question of accuracy of diagnosis in autism is important. They are many inconsistencies with the earlier reports made by Kanner in 1945. Children have novel presentation and novel developmental histories. Late onset autism is more common than initially thought, but most of all, regressive autism with onset of medical problems is now seen. Strictly speaking a condition like the one my son has should either be diagnosed as Childhood Disintegrative Disorder or Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). Having learned a great deal in autism since these clips were made, including how to make an autism diagnosis using the ADOS (Autism Diagnostic Observation Schedule), I can say that his behaviour at the time totally fits the criteria of autism. Self stimulatory behaviour, communication issues, language difficulties, tonality of voice, echolalia, sensory issues (seeking and avoidance), social difficulties, attention, ADHD traits. But still the course of development is not as one would expect of classic autism by no mean. The point of this video is that behaviours can fit the diagnostic criteria but it still does not tell us why this has happen. But there is a reason to this. And it is only with medical investigations that one can find it.

I invite interested reader to see the arguments as to why we should question further any diagnosis of autism made today.

http://skymaker69.blogspot.com/2009/05/autism-what-hell-is-that-about.html

If you want to know more about my sons progression from that point see this video work in progress.

http://www.youtube.com/watch?v=0c893ztbYdc&feature=channel_page

I will update more of his progression with a current video to follow shortly.

Regarding the quality of the some of the clips: some videos were in a format, MPEAGAV that prevented me to use them with my current video editing softwares though I could still view the clips (how daft!). I spent several days downloading various free decoders without any success. In the end, I decided the film the videos as they played on my lap top, that is why it is not very good, but it is sufficiently illustrative of the behaviours.

Unfortunately I do not have any footage of my son prior to his regression. I was not into video at that point, it is really a shame. He was in mainstream nursery, age appropriate academically, speaking in full sentences, using past tense, could tell me of his day at school. He was very inquisitive, likes stories to be read, would ask questions. But he was lively, in retrospect I can say he was Asperger with strong ADHD tendencies before the regression occurred just before turning 6 as described above.

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• Autism Diagnosis PDD-NOS

[emmypinkchocolate]

We suspect our has CDD. He was showed signs at birth of 'classic' autism. (Didnt like to be held facing inward, didnt like the flash from cameras, would not nurse, etc) His shots were delayed 3 years do to close family members having cancer treatments. At the age of 2 he was speaking about 20 words, then it slowly stopped. But for him its kind of odd. He will learn new things, then forget old things. Or vice versa...he will regress, then make leaps and bounds in no time in another area.

[Skymaker69]

@emmypinkchocolate Hello there- sorry to hear- you should investigate- epilepsy? Infection? Possibly both. Any regression and fluctuation has a cause- often this can be addressed- most drugs masks symptoms and do not address the cause unless of course this is with regard to an infection and the drug is an antibiotic or antiviral etc.

[Imogen1885]

PANDAS

[Skymaker69]

@Imogen1885 Likely Lyme- hehas recently been diagnosed and given that we are recovering fundamental skills, motor coordination, awarness, cognition, energy level and communication with AB treatment, it seems that we are on the right track and that infection may explain a lot our history. We still have a lot to achieve, but now we have a path to follow.

[Kyuuqsoft]

i have been diagnosed with PDD when i was 2, and now, i'm 16, i grew out of some of the symptoms of autism.

[crazyelephantofdoom]

He probably wasn't diagnosed with CDD for one of two reasons: The doctors had little knowledge on CDD or CDD will soon not exist as a catagory.

Research has shown CDD to be the same condition as late onset autistic disorder. Asperger's syndrome and PDD-NOS are also being assimilated into what shall be called autism spectrum disorder. Rett syndrome is being removed from the PDD classification, although many are opposed to this.

The treatment is the same so it doesn't really matter.

Good luck.

[Imogen1885]

@Skymaker69 I wish you the very best.

[nxer]

@bawbapgrc i mean, i've been focusing quite a bit on it. it is a project i am working on. i hope answers are found soon.

[nxer]

@bawbapgrc i hope i don't open any sort of can of worms for you. your child is in my thoughts. i wish the best for you and your kid!!