ESCAP 2017 SYMPOSIUM: PSYCHIATRIC CARE OF DEAF ADOLESCENTS

A doctor's dilemma: cure the deafness or sign into a new language

Deaf children with mental health problems have a harder time than their hearing peers. Before a therapist gets a chance to look at their disorder, another doctor may want to first cure their deafness. "A paternalistic view that denies the deaf person's identity", says professor Karen Goldberg (University of South Florida), who stands up for the improvement of psychiatric care of deaf and hard of hearing children and adolescents.


Nyle DiMarco and Peta Murgatroyd dance to The Sound of Silence.
DiMarco was born deaf and uses American Sign Language.

The next pitfall for these patients will most likely be communication trouble: the psychiatrist does not speak their language and chances are that they will be misunderstood. This overcomes young patients – at least in Europe – in a context of low budgets and very few specifically trained professionals. The European Society for Mental Health and Deafness (ESMHD) held their 6th world congress in Belfast, September 2014, including several topics on children and adolescents, but has been invisible since. "Our Belfast congress was successful despite the low budget. Unfortunately, our service provider then pulled the plug from our website, without notice. We hope to be online again very soon", says ESMHD president Dr Ines Sleeboom-van Raaij, noting that southern European countries seem to suffer most from budget cuts. Dr Ana García (Madrid) and Dr Nora Olazabal (Bilbao) say they indeed still feel the scantiness of the financial crisis. Nevertheless, they are optimistic about reinstalling international collaboration.

Facts on the young deaf and mental illness justify the aims and goals of the Spanish and American team that presents the symposium Psychiatric care of deaf and hard of hearing adolescents at the ESCAP 2017 Congress in Geneva. Deaf children are more likely to experience mental health issues – recent European figures say 30 to 50 per cent more likely. Communication is a big issue for deaf families, and the developmental pathways for deaf children appear to differ significantly from their hearing counterparts. This needs to be properly addressed for mental health treatment to be effective.

Delayed development
Dr Karen Goldberg (University of South Florida)
Deaf and hard of hearing children deal with specific mental health problems. Delayed development of language is the first to be mentioned while discussing the issue with professor Goldberg and her Spanish colleagues from the University Hospital Gregorio Maranon (Madrid) and the Basurto Hospital (Bilbao), who will be joining the 2017 ESCAP Congress in Geneva to present their symposium on psychiatric care of deaf adolescents. "Language deprivation has secondary consequences on interpersonal relationships, attachment and on recognizing emotional expression and general control over emotions. Language is a really important foundation for the development of the child's personality. Not sharing the oral language puts you outside of the world around you", says Nora Olazabal (Bilbao). "These children often feel like they are a minority within their family."
Ana García PhD.Dr Nora Olazabal.Goldberg: "It is remarkable that many deaf children know very little about their family history. They simply miss out on the accidental conversation on those subjects. If you do not have language, you simply don't know how to modulate your emotions and the longer that goes, the more it will become pathological."

Comorbidity
This basic issue for deaf children implicates difficult comorbid diagnostics for mental health specialists. They regularly come across parents who voice the dilemma like: How do I know this is deafness, and not ADHD or some other mental health problem? Goldberg says she tends to answer this question with a smile, by the perspective that it is probably a little bit of both. "But the first real recommendation for the environment of deaf children has to be: learn the sign language."

Sign language
"Sign language is a real language, with its own grammar and syntax, history and beauty. It is a beautiful artistic expression. But the view still is, that a child cannot be successful unless it merges into the hearing world. Nyle DiMarco is an example. He was deaf all of his life, he communicates with American Sign Language and won the Dancing with the Stars contest. He does not hear any of the music, but his dancing is more perfected than the performances of many hearing competitors. He now is a role model for the deaf community, showing that deaf people using sign language can shine like any other star."

Identity
Goldberg refers to a colleague who is a deaf mental health therapist, refusing to use modern technology to simulate hearing. She says: "This is who I am, this is how I was meant to be: a successful person, born deaf." So she has a very strong deaf identity. Worldwide there seems to be a strict division between the deaf communities who choose to live with sign language only, and the ones who think that it would be better for their educational development to use technical devices, such as cochlear implants." Professor Andrew Solomon (Columbia University) praised the values of deaf culture, and describes this division as the vertical, technological identity versus the horizontal, social identity (Far From the Tree: Parents, Children and the Search for Identity, 2013).

"Not obliged"
Goldberg: "When a child is born deaf to hearing parents, they often have access to the medical information first. They will be offered cochlear implants or other medical solutions, and there will be not as much information given to them about the full choice: you are not obliged to do implantation, you can raise your child without the implant, learn sign language and support your child with educational programmes for the deaf, such as NTID in the Unites States. We have to make child psychiatrists and paediatricians aware that this choice exists – they need to be educated too, being used to this very strong medical model, that seems to prescribe: 'this is a disability and it needs to be fixed.' They ought to know that members of the deaf community tend to view deafness as a difference in human experience rather than a disability or a disorder. It is interesting to see how a lot of children with cochlear implants start to reject the implant when they become older, and embrace their deaf identity."

Diagnosis
Youngsters who are deaf or hard of hearing have less access to precise diagnosis if the therapist does not speak 'their language'. Goldberg: "A young man was recently referred to me with a diagnosis of schizophrenia and psychosis. But when I saw him, it was so clear to me that his problem was in the autism spectrum. His first doctor missed that because he or she poorly understood this patient. But in general, and more importantly, mental health therapists need to understand that you cannot just apply what you know from the DSM and evidence-based research and plop it on top of the deaf. In the specialized education for child and adolescent psychiatrists, we are implementing more and more specific training on diagnoses for deaf children. It is not common practice yet, but it is getting better. In Florida for example we have started working with actors to practice interview techniques, focused on people with special needs. That could be somebody who is in a wheel chair, somebody who is blind, but also someone who is hard of hearing."

Improvising special training
Ana García (Madrid): "In Spain, the universities unfortunately do not have specific psychiatric courses yet for working with deaf children. But we do our best by improvising special training for interns, guided by the two institutes – in the Basque country and in Madrid – who have experience with deaf and hard of hearing patients. In my opinion, the best in class within Europe must be the United Kingdom, where they run fantastic programmes for deaf children. We regret that an older generation of pioneer experts have recently retired in some European countries – France, Sweden, Finland for example – and we have difficulties to continue the services and secure the knowledge that was developed by these wonderful people. In Spain, OK, we have services in Madrid and Bilbao – but there is no sense in asking a child who is 400 kilometres away to come over for a one-hour session." Goldberg: "We share the problem of low-density care with our European colleagues. More child psychiatrists need to be trained, and we must develop tele-psychiatry. Both for the United States and Europe. And I am not even mentioning the problem of licensing between different states and countries, and the different oral and sign languages in all of these areas." Olazabal: "The effects of the financial crisis on our services are also worrying us, and is still standing in our way to develop better international collaboration in providing mental health care for deaf young people. Investments must be made and money is always an issue. Mental health professionals do get more interested and aware of the needs of deaf children, but progress is slow. We are planting little seeds, so to speak, that we hope will become big trees when we are not there anymore."

Respond to this story.
View the Gallaudet University European deaf statistics.
View all symposium abstracts on Transition issues in the psychiatric care of deaf and hard of hearing adolescents.

Karen Goldberg and team.
Reinstalling international colaboration. From the left: Ana García PhD (University Hospital Gregorio Maranon, Madrid), Nora Olazabal MD (University of the Basque Country, and the Department of Psychiatry at Basurto University Hospital, Bilbao), Verónica Pousa, psychologist (Basurto University Hospital, Bilbao), and professor Karen Goldberg MD (University of South Florida, Tampa).