[Posted on 2 May, 2017 by Christopher Gillberg]
There is an ongoing debate about the validity of the autism spectrum disorder (ASD) diagnosis (see Waterhouse et al 2016, and Muller and Amaral 2017). People are getting concerned that refocusing research from AUTISM ONLY to AUTISM PLUS (i.e. autism with other “non-autism” associated problems) or ESSENCE (see Gillberg 2010) will lead to the downfall of services for individuals with the problems that we currently group under the diagnostic label of autism. While I am a strong advocate for the research deconstruction of autism I am still a “believer” in the clinical concept of autism. It will take many years (indeed probably decades) before we can replace the current label with a word, dimension or concept that better captures the quality of “the phenotype” and the need for specialised services and follow-up for individuals affected by “autism”. Why replace it at all so long as people know what we mean by it? – The big problem today is that so many people involved in the clinical day-to-day services (including assessment teams) have relatively little experience in the field of neurodevelopmental disorders/ESSENCE, and that they seem to – almost blindly – trust the algorithms of the ADI and the ADOS, instruments that were validated against experienced specialists´ clinical diagnoses of autism. The ADI and ADOS can never be better than an experienced clinician´s comprehensive assessment. The younger generation of “to-be-specialists” need to get experience from the whole field of ESSENCE. The older generation of “specialists” need to stop recommending the “autism specific instruments” as abracadabra solutions to the many-faceted assessment needed in cases presenting with autism symptoms. People with ASD usually have so many more problems than just those captured by the ADI/ADOS, and no “autism diagnosis” is complete without a full coverage of these other problems (several of which have better validated treatment options than autism per se).