Then there is the issue of the transition to adulthood
This is another critical element, both for the so-called 'transition' from structures for minors to those for adults - on which there are still experiences limited to single ASLs without large-scale coordination - and because many psychiatries for adults still struggle to manage autistic persons as they should, that is, supervising the life project and guaranteeing therapeutic interventions.
At the Bambino Gesù, when faced with a 17-year-old patient who will need the adult care service once he comes of age, we contact the Asl, propose meetings with the family, the adult psychiatrist and the child psychiatrist. The objective is that this transition is guaranteed by a real continuity of care. Then it is clear that there is territory and territory: there are very diversified realities even in regions where services are better, such as Lombardy, Tuscany, Lazio, part of Emilia Romagna and Piedmont. Unfortunately, it happens that the family finds itself 'holding the bag', no longer followed by the paediatric centre and without support of a different nature. There is a great responsibility in the hands of the Regions, and unfortunately, even in this case, the most uncovered areas are the South and the islands, which are suffering severely. But it must be stressed that it is only in a network context that the integration of an adult with autism can be facilitated, from relationships to sociality to the world of work. We can no longer work in watertight compartments: autism is a condition of the person, which must be tackled in its entirety.
In the meantime, you have the burden and the honour of early diagnosis and evidence-based interventions
First of all, not all treatments are appropriate for everyone: they must be individualised and modified according to age. In almost all cases, the reality is quite different: an autistic child taken into care by a local health authority starts with psychomotricity and speech therapy and often continues them into later life, for which there is no evidence. For the Aba method itself, which is not a therapy but an analysis of behaviour from which a series of possible treatments are derived, we only have data of effectiveness up to the age of six. In later years, on the other hand, we have evidence for 'social skills', i.e. for autonomy work. It is therefore the experiences the child has in his or her life context that make the difference.
All this is still little known?
The indication is to implement the treatments rigorously, avoiding free interpretations. In general, many ASLs recycle operators by applying treatments without specific training. This phenomenon is all the more evident in the private sector: autism is now a business and many operators improvise after weekend Aba courses. The advice to families is to turn to highly qualified centres.
If they can find them
In fact they are few and far between and in large cities, while parents are often forced to adapt to circumstances. Today, however, we have made progress: we know the range of treatments that can be proposed, including parent-mediated therapy - who become 'expert educators' - on which we have data of effectiveness. There is a big problem of training but also of evolution and organisation. Not much investment is needed. Yet we continue to operate with old models, disconnected from the evidence and hooked instead to the rituality of the activity that has always been put in place, without updates. It is like treating cancer or AIDS with the same drugs that were available twenty years ago.
How much does this impact on families?
Treatment that is not effective does not give answers in terms of improvement. They are interventions that leave time to be found, even though they may not harm the child. But it is clear that the better we treat them as children, the less the impact will also be in terms of comorbidities as adults, benefiting society and the sustainability of the health service.
