autistic-like or autism

As new Dad Erik Linthorst points out in his recently released documentary, Autistic-Like: Graham's Story, the birth of his son started out as a perfect beginning. Around 17 months, something wasn't quite right.

Finding out what's wrong with our children after their developmental trajectory teeters and then plummets is a primal instinct. Being handed a label that we don't like, such as autism, makes it difficult for many to recover from the blow of the diagnosis and move forward to start immediate early intervention.

It was my worst nightmare when my son was handed the autism diagnosis. Like Linthorst, I felt that the diagnosis didn't fit my child's behavior. I sought a second opinion. It changed his diagnosis from autism to PDD-NOS, short for pervasive developmental disorder–not otherwise specified, or atypical autism.

However, I can't say for sure whether it would have changed his course of treatment. I didn't treat the label: I treated the symptoms.

Although I have not seen the documentary, just the trailer, it appears that Mr. Linthorst settled on relationship-based therapies, particularly Floortime, rather than therapies grounded in behavior modification. I'm also a fan of Floortime, as well as applied behavior analysis, particularly applied verbal behavior, both of which are based on the pioneering work of B.F. Skinner.

I think Mr. Linthorst did a commendable job with a well-produced documentary and chose a title, Autistic-Like, that will resonate with many parents who feel less stigma saying their child has a sensory processing disorder (SDI) rather than autism, which is a recognized disorder in the professional manual clinicians use to diagnose mental health disorders. SDI is not.

But I hope the message is to seek treatment early and not to debate the merits of one treatment or label over another. What worked for Graham or my son is as unique as the smiles on their faces.

Comments

[Harold L Doherty]

I like your blog. I just found it and had a quick look. I agree with your support for a scientific, evidence based approach to autism cause and treatment.

I also agree with your emphasis in this comment on early intervention. I part company with you though on the merits of Floortime as an evidence based intervention:

MADSEC Autism Task Force Report, page 6:

• Without scientific evaluation of any kind:
Greenspan’s DIR/”Floor Time,” Son-Rise.

1. MADSEC Autism Task Force Report, page 43:

Discussion

There have been no peer-reviewed, published studies of Greenspan’s DIR/Floor Time’s
effectiveness for children with autism.

Conclusions

There have been no peer-reviewed, published studies of Greenspan’s DIR/Floor Time’s
effectiveness for children with autism. Researchers should consider investigation using research protocols. Professionals considering Greenspan’s Floor Time should portray the method as without peer-reviewed scientific evaluation, and should disclose this status to key decision makers influencing the child’s intervention.

The American Academy of Pediatrics reviewed autism interventions in Management of Children with Autism Spectrum Disorders(2007) and stated, at page 5, with respect to RID that:

Relationship-focused early intervention models include Greenspan and Wieder’s developmental, individual-difference, relationship-based (DIR) model,55 Gutstein and Sheely’s relationship-development intervention (RDI),56 and the responsive-teaching (RT) curriculum developed by Mahoney et al.57,58 The DIR approach focuses on (1) “floor-time” play sessions and other strategies that are purported to enhance relationships and emotional and social interactions to facilitate emotional and cognitive growth and development and (2) therapies to remediate “biologically based processing capacities,” such as auditory processing and language, motor planning and sequencing, sensory modulation, and visual-spatial processing. Published evidence of the efficacy of the DIR model is limited to an unblinded review of case records (with significant methodologic flaws, including inadequate documentation of the intervention, comparison to a suboptimal control group, and lack of documentation of treatment integrity and how outcomes were assessed by informal procedures55) and a descriptive follow-up study of a small subset (8%) of the original group of patients.59

[Jayne Lytel]

Harold, while there is heuristic evidence behind Floortime, I agree with you that it is less sound than aba. I always seem to find myself in a quandary over what to tell parents, because I know that they are trying their best. I draw the line at voodoo-science therapies, such as chelation, which can harm a child's brain even more, as evidenced by the National Institutes of Health scuttling its trial over the merits of this unorthodox therapy. I wouldn't support clay baths either. While it can't do any harm, I would hope that parents exploring this type of therapy wouldn't do so at the exclusion of therapies with more scientifically proven strengths. But the point I was trying to make is to not get hung up on the label. Believe me, autism has not lost its shock value for me. I would have preferred to have said SDI.

[jackspar]

Each individual will take their own time to discover that they need an alcohol rehab treatment. When the person struggling with and alcohol addiction calls you for help, you’ll perceive that the intervention worked.
Drug Intervention

[Mary Jane]

Hi - I am a floortime mom and always feel compelled to say that, while studies of floortime could be better, the fact is that all the research into interventions is lite - small sample studies, no intervention measured against another, etc. The much sited Lovaas study innvolved 14 kids and was NEVER replicated.

So, to balance the above, I am posting the excerpt below. We're halfway there, I hope and pray, with our three-year-old daughter - mostly thru FT . And I know FT recovered kids. But the sleepless night go on.

quoted from ICDL.com:
The National Academy of Sciences (NAS), in its report“ Educating Children with Autism” (National Academy of Sciences, Committee on Educational Interventions for Children with Autism, NRC, 2001), states that there is research support for a number of approaches, including DIR/Floortime and behavioral interventions, but that there are no proven “relationships between any particular intervention and children’s progress” (page 5) and “no adequate comparisons of different comprehensive treatments” (page 8). The report concludes that effective interventions vary depending on an individual child’s and family’s needs. The NAS analysis further indicates that behavioral interventions are moving toward naturalistic, spontaneous types of learning situations that follow the child’s interests, and note that “studies have reported that naturalistic approaches are more effective than traditional discrete trial at leading to generalization of language gains to natural contexts: (Koegel, Camarata, Valdez Menchaca, and Koegel, 1998; McGee, Krantz, and McClannahan, 1985).

[Levi]

I'm inclined to agree with you.
http://www.rapidsharemix.com