Autism: Algeria mobilised to improve care

Prof. Mohamed Chakali, Deputy Director of the Promotion of Mental Health at the Ministry of Health, Population and Hospital Reform (MSPRH), is a psychiatrist and focal point for the Autism PROFAS C+ project.

Mobilised as an expert for the project, Saïd Acef is Deputy Director of Autonomy at the Nouvelle Aquitaine Regional Health Agency (RHA). He is former ministerial advisor on disability (2014-2016) and was responsible for the 3rd Autism Plan 2013-2017. In the context of the project, he is working with Ghislain Magerotte, a doctor of psychology, professor at the University of Mons (Belgium) and Honorary President of the SUSA (Specialised University Service for persons with Autism) Foundation.

Prof. Chakali, what reasons led to the implementation of this project on screening, diagnosing and treating autism in Algeria?

Prof. Mohamed Chakali – This project came about through a concern that my ministry shares with families, associations and health professionals. We are faced with three major issues. Firstly, the scale of the prevalence of autism: in 2015, based on the average worldwide prevalence, the number of individuals with Autism Spectrum Disorder (ASD) was estimated at some 400,000 out of a population of 41 million inhabitants.

The second issue is related to the fact that there really are very few structures and teams trained in these subjects. In the large urban centres such as Algiers, Constantine and Oran, there are already certain facilities. But there are also isolated regions and populations: they are faced with difficulties in terms of the diagnosis and treatment of ASD, despite the dynamism of local associations. To meet their needs, our challenge will be to recruit and train health workers in the diagnosis and treatment.
 

Autism Spectrum Disorder (ASD) needs to be identified at the earliest possible stage

Finally, the third issue involves informing and raising the awareness of parents about the subject of autism because to treat ASD effectively, it needs to be identified at the earliest possible stage. We believe that Algeria could benefit from foreign experience on all these issues. This is why we requested support, which led to the implementation of the Autism PROFAS C+ project.

What are your priorities for action on this issue?

Prof. Mohamed Chakali – We have already taken steps to promote ASD screening, in particular by setting up a training programme. This training is led by child psychiatrists and is intended for doctors and other mother and child protection (MCP) staff who work in local public health establishments (EPSPs). They are in the front line when it comes to screening for autism nationwide. So, we are currently focusing our attention on the diagnosis and even more so on treatment.
 

Recruit and train specialists nationwide
 

The diagnosis cannot be taken lightly: it must be made by qualified health professionals, based on diagnosis tools and methods they have been trained in. Our priority is to recruit and train specialists in this issue nationwide. We also want to organise a referral and counter-referral system so that in the event of doubt, they can seek the opinion of a child psychiatrist: this should allow them to refine their diagnosis without asking the patient to come.

Furthermore, there are major needs in terms of treatment. This will require adapting our system (appropriate educational programmes, support for families…). For example, vocational training centres are currently not open to adolescents with ASD: it would be useful to change the regulations to allow them to access this type of training and thereby promote their professional and social integration.

Who do you work with to improve the diagnosis and treatment?

Prof. Mohamed Chakali – It is a complex subject, as the issue of autism is multidisciplinary and multisectoral. To reflect together, in 2016 we created the National Intersectoral Committee on Autism (CNIA), which includes the relevant ministries (Health, Education and National Solidarity, as well as Higher Education and Vocational Training), health professionals and associations of parents of children with autism.

The issue of autism is multidisciplinary and multisectoral

These associations are key partners. They play a role in raising awareness among parents, but also as intermediaries with the public authorities, as they communicate the concerns and needs identified on the ground. Some have also set up support centres, for example, for schooling or treatment for children with ASD. In this case, the role of the State is to oversee these structures: we work to ensure that the treatment is provided in accordance with regulations and under the best possible conditions for the patients.

Furthermore, to assist us with the development of our future Autism Plan, the experts Saïd Acef and Ghislain Magerotte are currently carrying out an expert mission to assess the conditions for the medical-psychological, social and educational care for people with autism. Their recommendations will inform us about the measures that need to be developed.

Saïd Acef, you started this evaluation at the beginning of 2020 together with Ghislain Magerotte. What are your main recommendations at this stage?

Saïd Acef – As Professor Mohamed Chakali has pointed out, with Professor Ghislain Magerotte we are conducting a support mission whose objectives are to take a detached view of the current educational and therapeutic intervention methods for children with autism and the support provided to their family. It is too early to establish recommendations, as we haven’t met all the stakeholders in the different parts of the country yet.

The general and social representation of autism needs to be re-examined

However, lines of action are already beginning to emerge. In the background, we observe that the general and social representation of autism in the general population, but also among a number of professionals in various sectors of intervention (education, solidarity…), needs to be re-examined in the light of models for understanding from scientific knowledge. The expert teams we have met, as well as the very committed associations of families, have told us about this: autism is often identified as a behavioural disorder with all the limitations this can lead to in terms of access to regular schools and conventional activities with the other children.

Place emphasis on strengthening the educational skills of parents
 

Secondarily, and as in all countries, we would like to emphasise the support and guidance for parents and the strengthening of their educational skills, right from the first stages of their path when they discover the difficulties of their child and move towards the diagnosis then the implementation of specialised interventions. There is an extensive and very active network among the associations of families. There is also a strong relationship of trust with the network of experts and, firstly, with the child psychiatry university services. This is a tremendous asset which we should be able to draw on to develop “parents’ school” education programmes, consistent with a coordinated path of early diagnosis and interventions. This is the key to an evolving prognosis favourable for the child and relieving the burden on the parents. Taking families by the hand in this way would also require creating a form of single window for information and resources in the various territories.

Finally, and obviously, there is the major issue of structures that are more or less specialised and professional practices in the different sectors of education, solidarity and health. We have met committed and willing professionals and officials from administrations who are responsive and determined to move things forward. To do so, it seems clear to us that pre-service and in-service training programmes must be deployed on a large scale. They are necessary but not sufficient. It would probably be appropriate to combine them with the supervision of practices and quality control of the structures and practices by the State. I would also venture to say that the human resources and skills currently positioned in solidarity structures have significant potential for development on which we will make proposals.

More generally, how will the activities planned under the project contribute to supporting the Ministry of Health?

Saïd Acef – In addition to the various recommendations we will make, we hope that the activities implemented will also have an impact on the institutional frameworks between the different ministries. For example, we have seen the extent to which the education and solidarity sectors have in their hands the key for a major transformation of the life paths of children with autism. Provided that their skills are strengthened, solidarity structures must be able to intervene more effectively in regular schools, beyond the specialised classes we have been able to visit. This is also the case with the coordination with the health sector. It is a cornerstone of the current care system and has heavy responsibilities. This health expertise is in the process of being structured, in particular through the recent creation of the child psychiatry branch. We hope that our activities will enable the creation of fields of excellence for autism and neurodevelopmental disorders in children.
 

There is real expertise in Algeria, we need to capitalise on it

More generally, the Profas C+ programme could have an impact on other institutional frameworks. It is essential to create an official resources website to pass on the right information about autism and the existing services. The creation of a network of trainers and high-level experts would strengthen the current teams and, especially, reduce the dependence of professionals and families on foreign trainers. There is real expertise in Algeria, we need to capitalise on it.

How could European expertise in this field be useful?

Saïd Acef – European expertise, especially in France and Belgium, firstly allows us to learn from the mistakes, shortcomings and lags which these countries are still experiencing. So, when we meet our colleagues and Algerian partners it is with humility. However, we can illuminate the path based on several feedbacks on European experience. Firstly, the importance of reaching a scientific, political and social consensus on autism. This requires developing recommendations for good professional practice based on an updated state of knowledge. This is how Belgium, France and the UK have proceeded. It is a necessary base for building a sustainable public policy.
 

Autism is firstly a question of social and school inclusion

There is then the essential investment in the triptych of “early detection, diagnosis and interventions” including parental support. This leads to the importance of recognising and strengthening the role, representation and legitimacy of associations representing people and families. Finally, and we probably should have started with this, while autism is a matter for specialists, it is firstly and always a question of social and school inclusion and of promoting social roles. It is therefore necessary, as rapidly as possible, to initiate a reversal of the perspective that most countries have implemented by creating a specialised sector, beside or even apart from ordinary life. This cannot be deconstructed overnight but ultimately, there are no other paths. France made long detours before taking this path of regular school, employment in a normal working environment and living in the community. The social return on investment of this type of inclusive policy is easily demonstrable and demonstrated.

More about the Autism PROFAS C+ project