Few understand Autism Spectrum Disorder better than 26-year-old Graziella Bezzina, who was diagnosed as being severely autistic only four years ago. Working as an LSA in a primary school, she is aware that talking about her condition can cause problems. Nevertheless, she opens up to Adriana Bishop about her dream to run a home for teenagers with mental health problems. But first, she wants to break down a few stereotypes surrounding her own condition.

Her autism diagnosis is only the fifth thing Graziella Bezzina tells me about herself in her pre-interview introduction e-mail after her age, 26, the fact that she lives in Birkirkara, her job as an LSA in a primary school and that she is reading a bachelor’s degree in Youth Work at the University of Malta. 

In other words, while we are here to discuss her condition, it does not define her. And that is the first important lesson I learn from this remarkable young woman.

The second is that she likes to plan things well and follow a structure. 
For this reason, she wants to see the questions in advance, and they must be direct questions. It goes contrary to the norms of interviewing, but I acquiesce. The long list of questions sent to Graziella a few days prior to our meeting is now resting on a low table in front of us. We tick them off one by one as we proceed with the interview, while Graziella counts how many pages of notes I write – 21 pages in my A5-sized notebook, or “seven times three” as she quickly points out.

We meet at the offices of Richmond Foundation in Sta Venera, which works with adults who have mental health issues and runs several residences, including Villa Chelsea, for people like Graziella. 

“You have to dress up smart if you come to visit me because I live in a villa,” Graziella quips. 

We are not alone during the interview. Casey Scicluna, Villa Chelsea’s rehabilitation manager and Graziella’s “rock” sits next to her. Graziella is clearly comforted by her presence. Kelly Cassar, housing officer and community support service at Richmond Foundation, is also there. 

In reality, Graziella needed neither Casey’s reassurance nor Kelly’s support. Her initial shyness and nervousness are soon swept away as she ably commands the floor for the next two hours. She even relaxes enough to take off her outdoor jacket, and by the end of the interview, I win her approval. “I was nervous at first, but you’re OK. You’re not strange.” 

Graziella is just one representation of autism; she is not the sole example of this wide-ranging condition. Autism Spectrum Disorder [ASD] is a neuro-developmental disorder characterised by challenges with social skills, repetitive behaviours, speech and nonverbal communication. According to Autism Speaks, there are numerous subtypes of autism and most are influenced by a combination of genetic and environmental factors. 

Every person with autism manifests his or her own unique strengths and challenges. Some are extremely intelligent and high functioning, requiring little support, while others may need a considerable amount of help. The way people with autism learn, think and solve problems varies widely depending on the severity of their condition. 

'I was in denial when I was first diagnosed'

Figures indicating the number of people with ASD in Malta are unclear, but based on UK statistical analysis, it is generally believed that as many as one per cent of the population may be affected. An increasing awareness and understanding of the condition have led to more cases being diagnosed in recent years. 

Autism is usually diagnosed in early childhood, often by the age of two or three. Graziella, however, was only diagnosed at the age of 22, despite the fact that she did not speak as a child. She was never taken to a specialist for a proper diagnosis.

When she finally took the test, she scored “severe”. Initially, she could not and would not believe it. “I was in denial,” she admits. “I did not accept it. How is it that they never noticed it before?” 

She immediately asked to retake the test with a different psychiatrist, but it was not possible. “I kept trying to find reasons for my diagnosis.” 

Two years later, she asked once more to retake the test. “This time, I prepared myself better so I wouldn’t be ‘marked’ as autistic, but the result of the second test was ‘severe’ again; only this time, it was just slightly less markedly so.”

The diagnosis was a revelation for Graziella. “The jigsaw puzzle of my life started fitting.” It was an uphill struggle for her to accept the condition and learn to live with it and she is the first to admit that she did not make it easy for herself, nor for those who tried to help her. 

Graziella was convinced Richmond Foundation could not help her as nothing had previously worked. “I was convinced that it was going to be a waste of time. When I started at Villa Chelsea, my behaviour was very difficult as I could not understand how these people, who were strangers, could help me and support me. It was very difficult for me to believe, accept and allow them to see me for who I am,” Graziella confesses.

“I started to build relationships that were healthy, and this was all new and challenging to me. Even though there were times when I did not follow the programme, they still supported me and showed me respect. For the first time ever in my life, I felt that I had the same rights as everyone else; that I can have an opinion; that I am a human being just like everyone else."

'My condition is part of me now'

Suddenly, I felt that Graziella was also someone who was confident, loved and cared for and accepted by the members of Villa Chelsea. "It was as if Graziella was somewhat non-existent and Richmond Foundation facilitated and supported the process of building herself up,” she continues, switching into the third person, a typical trait in persons with autism. “I found what I had been seeking and wishing throughout my life.”

And does she accept her condition now, I ask her? “Well, it’s a part of me now, isn’t it,” she quickly replies. “I have to live with it now. I know my weak points. I can contain myself more. You know certain symptoms, but at first, you don’t understand why things happen in a certain way. I still stubbornly believe that certain traits are a result of my childhood. Now I am kinder to myself. 
I used to hurt myself, but I am better now. I now understand that things happen, which are out of my control.

“When I first came to Villa Chelsea, I was like a wild animal. They restored my foundation. They recreated Graziella. They helped me to accept my condition. They boosted my confidence and made me feel useful. I feel empowered because they allow us to cook and do our own housework.”

Some who work in this field may understand, but others will stigmatise me immediately. By hiding it somehow, I am accepted, but if I reveal [my condition] they will accept me less.

But the bigger question is: do others accept Graziella? She confesses that her family, with whom she is not in contact anymore, her work colleagues and her students do not know she is autistic. I point out to her that this article will change all that. 

“I don’t know what their reaction will be and that scares me a bit,” she concedes. She is acutely aware of the stigma surrounding this little known and misunderstood condition. “Some who work in this field may understand, but others will stigmatise me immediately. By hiding it somehow, I am accepted, but if I reveal [my condition] they will accept me less.” 

'I was afraid people wouldn't employ me'

Graziella was also concerned about repercussions from employers. She has been working as an LSA in a primary school for four years now and actually finds that her condition makes her better equipped to understand children with learning difficulties. However, she understands that people may find it difficult to accept.
 
“I was afraid that people wouldn’t employ me so I decided I wouldn’t tell anyone. I do well at work; I cope well; but people go on stereotypes. My work colleagues know me just as ‘normal’ Graziella."

“I teach in a Year 2 class. They are too young to understand, but their parents might read this. My fear is that they may reject me, or invent rumours about me. As long as I do my work well, then that is OK, but there is still a lot of stigma and ignorance about autism,” she continues.

An advantage of Graziella’s autism is her sharp intelligence, which helps her to cope with daily challenges. It also helps her understand others as they face their own life challenges. “I understand better than most how people feel in certain struggles. I often secretly diagnose others as I recognise they may be struggling with change anxiety, for example. When I first started working in this school, I was given an autistic child in a kindergarten class to look after. I was told this child was very difficult, but in reality, I took the case step by step and I managed him well. I have a boy with ADHD who always works well with me without any issues. I know how to handle children. I go down to their level. I find their ‘tactic’. The children love me, but I also know how to use discipline in challenging behaviour.” 

Graziella admits that her condition does hold her back from interacting with her colleagues, or asking for assistance. 
“I hate bothering them. They say I am the only LSA at school with whom they have yet to have a conversation.” 

Her condition means she is particularly sensitive to noise, which makes her feel “overwhelmed” and tires her out. Graziella also makes a big effort to contain her feelings of anxiety, which have long affected her throughout her life. 
“There isn’t much awareness about the physical symptoms of anxiety,” she points out, adding that when she was a child, a doctor misdiagnosed this as an “allergy”. Her anxiety is not part of ASD, but certain aspects of autism, such as unplanned changes and social interaction, will cause and exacerbate this. 
“I am sensory sensitive. I hear everything at once and that makes me more anxious. I cannot listen to music on headphones, for example. I tend to be more anxious than others, but I manage to control my anxiety.”

After work, Graziella spends three hours at university every day as part of her part-time degree work. “The university administration knows about my condition, but the other students in the course don’t. I follow all the same criteria as the others.”

Autism is not going to stop this formidable young woman from achieving her dreams. She insists that despite her condition, she can still engage with youth through her work. If anything, her condition makes it easier for her to understand the challenges they face. More than that, she has a clear vision of how she would like to help young teenagers who may experience mental health issues at their most vulnerable time between the ages of 13 and 18 when so many changes are happening in their life. 

'Teenagers need more help to manage mental health'

It is estimated that 70 per cent of all mental health issues manifest themselves during these critical adolescent years. Despite research showing the value and positive impact of an early intervention service for young people, there are currently no support services available for teenagers. Richmond Foundation’s own children’s programme ends at the age of 13, and then they can re-join when they are adults at the age of 18. 

“There is no help for teenagers at a time when they are facing so many changes with puberty, hormones, changing school from primary to secondary… This is the time when they are most affected by mental health issues. Between the ages of 13 and 18 is the critical time; a time when kids don’t understand themselves. They feel helpless. They feel they are being pulled in different directions; they want one thing while their family wants them to do something else,” Graziella says.

She is particularly passionate about this and she even addressed the issue in her speech at a special sitting of the National Youth Parliament last year, where she addressed the House as the leader of the Partit tas-Saħħa Mentali.
“At that age, even friends can shun you if your behaviour is odd. If young people find no help, their situation only gets worse, and by the time they get help [at the age of 18] they may already be at the edge.”

Graziella dreams of opening her own residential house for young people with mental health issues or behavioural problems. “These young people feel they are not accepted; they feel threatened; they have nowhere to go to understand their behaviour and their emotions. I want to give them a place where they can deal with such issues, so that they don’t end up at Mount Carmel or fil-vizzju.
“Mount Carmel breaks you,” Graziella adds. “After Mount Carmel, people come to Richmond Foundation to relearn the skills they had lost there. They relearn how to be in a community.”

Graziella is acutely aware of the importance of raising awareness about autism. As the condition can manifest itself in so many different behaviours, it is not easily understood. Social interaction with people who have the condition is tricky at the best of times. 

“Awareness helps people open their mind and not stereotype or judge,” Graziella points out. “Employers should see the person not their condition. They don’t see the potential. Work gives you a sense of belonging; it makes you feel capable. People [with autism] should not be afraid of being sacked or not accepted at work.”

'There is no need to pity me'

Lack of information about the condition meant that Graziella was never diagnosed in childhood – something she greatly regrets. An early diagnosis means that children can get help sooner. She also advocates for more day centres for elderly people with autism. 

“Older people with autism can be difficult to handle, especially if they are not so intelligent. There need to be more day centres for such cases so that they feel they belong somewhere. We also need homes specifically for autistic people,” she insists. 

“There is no need to pity these people. They just need help,” Graziella adds. “I am human. I am not meant to live alone. 

I want to interact, but I don’t know how. People try to stay away or minimise your potential and self-esteem. They don’t expect you to do so well.”

As my time with Graziella comes to a close, I ask her where she sees herself in the future, say in 10 years’ time. She hesitates a little and turns to Casey for her approval, but then replies firmly: “I want to see a total change in the mental health sector.” 

Her vision of her own personal future is not unlike that of any other 26-year-old woman: she wants to buy her own property and not continue living in a hostel, although she admits she might then feel “lonely”. She wants “a baby boy”, “friends” and, more poignantly, that “Casey will still be here… 

“Yes, I am happy now. I want to continue to be happy,” says Graziella with a finality that spells without any doubt that this woman knows her own mind.

Early Intervention Service for Young People – a proposal

Founded in 1993, Richmond Foundation is Malta’s leading NGO working in the mental health sector. The foundation runs Villa Chelsea, which accommodates 12 residents who live there full time for one year as part of a rehabilitation programme, teaching them to gain skills that would help them live independently in the community, especially after a prolonged stay at Mount Carmel Hospital. A further 12 clients use the facility on a day user programme. 

Richmond also runs three hostels accommodating a total of 33 people, and a further 62 reside in independent flats provided by the foundation. Some 109 people are currently being supported by Richmond’s team as part of its Community Support Service.

The foundation is now looking into introducing an early intervention service for young people in the form of a drop-in/appointment service for adolescents and/or their parents in a non-stigmatising environment. They would meet professionals who would assess behavioural issues that may or may not be resulting from the onset of mental illness. 

The Early Intervention Service “would be run by a multi-disciplinary team focused primarily on the psycho-social aspect of the illness and including a robust presence of a medical professional to facilitate the administration of medication where necessary and to encourage compliance,” explains Ms Cassar.
However, while proposing and implementing such a service can be easily achieved, running it “requires a lot of funds from the private sector”, she points out.

“Unfortunately, Malta is still experiencing stigma within the mental health sector,” Ms Cassar adds. “This stigma fosters discrimination against people with mental health problems. Richmond Foundation is continuously working to create more awareness on the importance of taking care of one’s own mental health. 
“Early intervention is important and crucial. Unfortunately, if stigma is present within this sector, it can hinder the possibility for someone to seek help. This can result in a deterioration of the illness.” 

If you have any questions about mental health, call Richmond Foundation’s freephone 1770. For further information, visit www.richmond.org.mt

This article first appeared in Pink Magazine.