There are at least three studies in which children with autistic disorder who had never spoken before started speaking within three months of administration of valproic acid. All three patients had epileptiform discharges in their EEGs.

This has been an area of much difficulty in trying to obtain an appropriate measure. Most tools that are suggested in the field are applicable to many other diagnoses than autism. Those that are developed for autism don't fair well with long term trajectories towards understanding quality of life outcomes. In addition, many of the assessments are obscured by the reality that many individuals with autism who also have severe challenging behaviors many off set scoring results in serviceable areas under many assessments. With most assessments many are not nor referenced and the reference groups used in neurotypical individuals who are age matched are not practical comparison populations (i.e. in essence this shifts most assessment scores to a lower value, simply due to individuals with autism not engaging in typical age matched activities and life style choices due to their social communication deficits that drive many of these life skills from adolescents onward). New tools are being developed to try to best address these true concerns, but have yet to materialize in the field(s) that require them to make best informed decisions for clinical programming for these individuals. Thus, your question and task you are undertaking is not an easy one, yet rather a really important and necessary task. In the US we are still struggling with this issue and most assessments look at objective behavioral measures which would predict long term outcomes, but many fail in how well these predictions can be re-assessed throughout adolescents and into adulthood. For children more tools are readily accessible due to the surge of early intervention approaches, research and support. However, adult hood is far less investigated.

This paper may be of interest. It raises some interesting issues relating to application of existing Quality of Life questionnaires to children/young people with autism (this is with children who are verbal, though). 'Finding out what matters: Validity of quality of life measurement in young people with ASD (2012). Rodgers J; McConachie H; Barron E; Tavernor L'

It depends in part on your research question and study design but you may find the item banks and short forms developed for neurological conditions through the NIH funded NeuroQol initiative useful at www.neuroqol.org. There are also pediatric short forms available. As stated on the website "Neuro-QOL is a multi-site NINDS funded project that aims to develop a clinically relevant and psychometrically robust health-related quality of life (HRQL) assessment tool for adults and children. It will be responsive to the needs of researchers in a variety of neurological disorders and settings and facilitate comparisons of data across clinical trials in different diseases."

Since many of the traditional clinical or functional measures of disease status do not adequately represent the full scope of the impact on an individual of chronic neurological disorders and their treatments, Neuro-QOL seeks to incorporate patient reported outcomes of functioning, such as social, psychological, and mental well-being."

@Harinder Jaseja - do you mean that there is the greater possibility of stricte organic factor in language defiicts in ASD than someone used to assume?

@Lorenz Neuwirth - you are right, persons with ASD have very special features as research sample and seem to be incomparable with neurotypicals, even those with developmental and mental disabilities but out of autistic spectrum. I am thinking not only about challenging behaviour of serious deficits in communication. The most important things seem to me: dissimilarity of the perception, of feeling, and in the end of interpreting experience and meanings, what make very difficult to precise a semantics of their QOL. Existing instruments assumpts some universal semantics of pleasure, good life, values of play, bonds, possessions, ect. This is possible that QOL measures adequate for people with autism could be completly non proper for you and me, at least in some extent (I mean of course the subjective indicators of QOL).

Some time ago I studied experiences of young adults with ASD continuing their education in college or university and I asked them about advantages and disadvantages of studying. Their answers reflected in my opinion a kind of semantic fields of domain- dependent subjective quality of life. Perhaps there is a good track for better understandig them by researching well-being via personal perception of own but in some way put up outside, experiences ?

@Ali Montazeri - I agree but not in 100%, because of the reasons included in an answer to Lorenz Neuwirth and -in this context - because that our proxy -agents can make a lot of mistake as using projection of their own needs, hopes, fears or fullfilments in assessing analogical aspects in child or adult person with autism. It would be much better if we have an instrument prepared in cooperation with (proposed by?) persons with autism and validated with them either, but for now, we have not it.

@Valerie Tadic and @ Alan Pickard - Thank you so much for your info. I follow this and found a very valuable material. I hope that proper measures and instruments will come to us as quickly as it is possible. A lot depends of severity of autism and similar disorders which we can take into consideration, as we are looking for "patient reported outcomes of functioning, such as social, psychological, and mental well-being." I think that athought there is difficult, there is not impossible according to disorders from spectrum of autism.

@Sana Ishaque - What kind of face based tools do you mean? It,s very interesting idea.

By the way, I once tried to use a kind of "Cantrill's ladder" as tool assessing student's self-esteem of pupils with Down syndrome and it was effective for an explorative goal. The children also could to explain their choice of status on the ladder by words or drawings and the data was quite interesting. Unfortunatelly, this kind of tool seems to be completly not proper for using among children with autism, because of deficits in area of symbolic and contextual thinking, much greater than among those with Down syndrome who often show quite good level of understanding, especially of social content.

Renata, you may find this instrument helpful although I am not sure how well it works for non-verbal children.

• Pediatric Quality of Life Inventory (PedsQL)

o Versions: PedsQL for Toddlers 2.0-4.11, PedsQL for Young Children 5.0-7.11, PedsQL for Children 8.0-12.11, and PedsQL for Teens 13.0-18.11

o Description: Questions about health-related quality of life based on the core dimensions of health as delineated by the World Health Organization

o Format: Questionnaire (Parent Report)

o Completed by: Parent or Primary Caregiver

o Administration time: 15 minutes

o Publisher: JW Varni Ph.D. link

o Reference: Varni, J.W. (1998). Pediatric Quality of Life Inventory (PedsQL). Medical Care, Inc. Press.

o Data collected: Questionnaire is itemized for all age groups. Also compute the Psychological Health Summary Score, Physical Health Summary Score and Total Score

Susan, thak you very much for so precisious reference. I'll try the proposed instrument too, perhaps it proves to be fruitful.