Nel 2011 è stato pubblicato un importante
lavoro che, nell’ambito della rassegna critica della letteratura sulle terapie
dello spettro autistico pubblicata nella decade 2000 - 2010, si pone il problema posto da
Armando
Warren Z, Veenstra-VanderWeele J, Stone W, Bruzek JL,
Nahmias AS, Foss-Feig JH, Jerome RN, Krishnaswami S, Sathe NA, Glasser AM,
Surawicz T, McPheeters ML. Therapies for Children With Autism Spectrum
Disorders. Comparative Effectiveness Review No. 26. (Prepared by the Vanderbilt
Evidence-based Practice
Center under Contract No.
290-2007-10065-I.) AHRQ Publication No. 11-EHC029-EF. Rockville, MD:
Agency for Healthcare Research and Quality. April 2011. Available at: www.effectivehealthcare.ahrq.gov/reports/final.cfm.
Più che risposte il
lavoro evidenzia le molte domande a cui ora non si puo’ dare risposta.
Il follw up, quando
c’è, è di pochi mesi o pochi anni e la migliore qualità di vita in età adulta
di chi è stato trattato precocemente con gli approcci più evidence based per
ora resta un auspicio, ma non una realtà documentata.
Dal lavoro citato
copio alcuni stralci
While controlled trials seem to be increasing, much
research is observational, generally with small sample sizes, limited followup,
and limited discussion of the durability of treatment gains once active therapy
ends
This sustained level of impairment, along with a lack
of longer-term outcomes data, makes it difficult to assess whether
treatment-related changes can modify long-term functional and developmentally
appropriate adaptive independence.
Duration
of treatment and followup was generally short
Few studies provided data on long-term outcomes after
cessation of treatment. Future studies should extend the followup period and
assess the degree to which outcomes are durable
Among children ages 2-12 with ASDs, what are the short
and long-term effects of available behavioral, educational, family, medical,
allied health, or CAM treatment approaches? Specifically,
KQ1a. What are
the effects on core symptoms (e.g., social deficits, communication deficits and
repetitive behaviors), in the short term (≤6 months)?
KQ1b. What are the effects on commonly associated
symptoms (e.g., motor, sensory, medical, mood/anxiety, irritability, and
hyperactivity) in the short term (≤6 months)?
KQ1c.. What are the longer-term effects (>6 months)
on core symptoms (e.g., social deficits, communication deficits and repetitive
behaviors)?
KQ1d. What are
the longer-term effects (>6 months) on commonly associated symptoms (e.g.,
motor, sensory, medical, mood/anxiety, irritability, and hyperactivity)?
KQ4. What is the evidence that effects measured at
the end of the treatment phase predict long-term functional outcomes?
4. Were
followup measures of outcome conducted to assess maintenance of skills at least
3 months after the end of treatment?
Unfortunately,
there have been to date very few well-controlled trials and those conducted
have used small samples…… and different outcome measurements over different
periods of time (weeks to years).
Longer
term functional outcomes are the goal for autism interventions
In terms
of followup for assessing durability of effects, most studies report on
outcomes collected immediately post-treatment or within 3 months of treatment
(76 percent of studies in the behavioral literature, 86 percent in the medical
literature). Additional research is needed on the degree to which changes
observed during treatment translate to functional outcomes over time should
treatment be discontinued.
Duration
of treatment and follow up was generally short, with few studies providing data
on long-term outcomes after cessation of treatment.
Future studies should extend the follow up period and
assess the degree to which outcomes are durable.
Daniela MC