Autism: three times more children waiting for a diagnosis for two years at the CHUS

Aline Lenquette is the mother of Raphaël, one of the 279 children who are currently awaiting an evaluation at the CHUSSherbrooke University Hospital Center to find out if they have autism. Figures that have almost tripled in the past two years, according to data obtained by Radio-Canada Estrie. If in 2019-2020, families waited an average of five months for this assessment, today they have to wait more than a year. And that is when all is well.

Raphaël, 11, has been waiting for many years for people to put words to the troubles he has had since early childhood. All professionals in the world of education denote in him symptoms associated with autism. Rigidity, lack of sociability, alignment, anxiety, tics, etc. We are not able to follow up on their findings in the field of health. We’ve been looking for help for all these yearslaments his mother, Aline Lenquette.

For this family, time is running out.

” Last year, Raphaël had anxiety attacks to the point of naming that he no longer wanted to live. We called social emergencies several times to tell them: “Help! We want to help our child and we are no longer able there!” »

Request for evaluation lost, misplaced file, request that has not been transferred from one professional to another, retirement of a doctor, cancellation of requests by the hospital, errors in the file accumulate. And meanwhile, Raphael and his family are waiting.

” This is Asterix’s madhouse! My doctor had made a request to the CHUS and one to the CLSC. You can not do that. The requests were cancelled, but no one notified us. This kind of incident has happened four times! »

School help

Raphaël’s symptoms are such that the school, sensitive to the situation, has agreed to give him a provisional two-year rating so that he has access to services, such as a specialized educator who accompanies him in his daily life. Aline Lenquette recalls that the school’s aid is temporary. My son is better since he got help, but if I don’t have an official diagnosis, I’m going to lose hershe hammers.

Not to mention that the bills are piling up at the Lenquette family. As Raphaël has no diagnosis, he does not have access to public services offered to autistic children. I would probably be entitled to the allowance for handicapped children which would help me cover all these costs for speech therapist, occupational therapist, remedial teacher. It’s quite expensive.

Devastated families

Sherbrooke MNA Christine Labrie is not surprised by the situation. Parents who deplore delays in being put on the waiting list for screening, for services or for respite, I see them regularly. It’s several years of waiting at each of these stages. Families are devastated because they know that the services to support their children are going to make a huge difference in their development. The parents are really distraught.

Christine Labrie has had meetings on this subject with the management of the CIUSSS de l’Estrie – CHUS, which cites staff shortages to justify the growing waiting list. I don’t know if we are using the full potential of each of the resources within the CIUSSS to shorten the delays. One thing is certain, the prevalence of autism is on the rise. They are not meeting the demand right now, and children are waiting for a very, very long time.

” Me, out-of-school autistic children, I see some here. Children who have been on waiting lists for years, I see some here. »

An employee who works in the trajectory ASDautism spectrum disorder goes even further. We don’t treat our customers well. These children are underserved and even neglected. Even before the rise in autism cases, there was chronic underfunding at the Center for Rehabilitation for Intellectual Disabilities and Pervasive Developmental Disorders (CRDITED). Since then there have only been seeds of investmenthe says.*

Wait, wait again

At the union that represents professionals in the health network, theAPTs,Alliance of Professional and Technical Personnel in Health and Social Services it is a file that we know well. For several months, we have multiplied the steps to improve the situation and to find solutions. Services must follow demand. Currently, in the intellectual disability and autism spectrum disorder network, what we see is that the services have not kept up with demand. What we are seeing right now are voids, which is very worrying. These are families who need a great deal of support. They find themselves without help from the health and social services network and for us, this is unacceptable.deplores the national representative of the union, Danny Roulx.

According to what has been reported to us by many parents, by the union and by employees, if a child has, for example, a language disorder and receives first-line speech therapy services from the ‘Estrie, he stops receiving this help if a suspicion of autism hangs over him. It’s the CREDITEDRehabilitation center for intellectual disabilities and pervasive developmental disorder which offers services, such as speech therapy, to people with autism. Here again, the wait can be several years before being entitled to it, depending on theAPTsAlliance of Professional and Technical Personnel in Health and Social Services.

A situation that makes Christine Labrie jump. The child should continue to receive services even if they are awaiting a diagnosis ASDautism spectrum disorder. It’s a very big problemshe laments.

” I notice things at the CIUSSS that are more difficult than elsewhere in Quebec. For example, speech therapy services that are interrupted because a child finds himself on a waiting list for autism screening, that’s not normal, but it happens here, in Estrie. »

Same story from the union. Parents and children must have ongoing services, regardless of whether an assessment is awaiting. That they have multidisciplinary services around them, that they have support. People fall into a void. These people should have, on the contrary, a continuity of services, which is unfortunately not the case at the CHUSdenounces Danny Roulx.

The CIUSSS de l’Estrie confirms that the delays have exploded

The CIUSSS de l’Estrie is aware that families can wait a long time before having an assessment, then the services required for the child’s situation.

Annie Michaud, assistant director at the CIUSSS de l’Estrie – CHUS in the direction of the youth program, explains this increase by two main factors: COVID-19, which had an impact on the CHUS’s ability to provide services, and the screening tools that have been improved, which has had an effect on the number of children suspected of having a ASDautism spectrum disorder.

The CHUS claims to have raised the teams, but the effect on the waiting lists will be in the coming months.

In a written response, the CIUSSS had also indicated that work is underway within the framework of the Agir Premier program, which aims to review the trajectory of services ranging from specific intervention to diagnostic evaluation ASDautism spectrum disorder. Several teams in our establishment work together with child psychiatrists and paediatricians with the common goal of reducing delays in obtaining a diagnosis..

*Radio-Canada wanted to protect this employee to avoid reprisals from his employer.