A conversation with Jessica, an advocate and person diagnosed with FASD, and Sue, her mother.
JESSICA: My name is Jessica and last year I was diagnosed with FASD, and what I think I'd like people to know about me is that I am pretty much like any other 34-year-old woman, I have the same sort of wants and desires, for love and relationships and friendships and career and community.
I really enjoy being at the beach, I like being in nature, I'm a bit of a nature lover, and art and design is also high on my list of sort of fun activities that I like to do, and I'm kind of just the same as everybody else.
[The prompt ‘Tell us some of the challenges’ is displayed on the screen]
JESSICA: The most difficult challenges I think that I faced growing up was definitely going through the school system. I really struggled with every aspect of that, you know, keeping up with schoolwork, understanding my lessons, staying focused, making friends, being able to socialise with my peers, those things were pretty difficult and I think ultimately for me, it was made worse because I really did want to do well, I was someone that was always wanting to work to a high standard and to achieve, and to struggle that way and not really understand why I was finding academia and the social structures difficult was quite upsetting and quite traumatic for me.
[The prompt ‘How did you manage those challenges?’ is displayed on the screen]
SUE: It was very difficult to manage these challenges that Jessica faced at school. I couldn't understand why she was struggling so much, because in her daily interactions with us as a family, she was always so bright and engaged, I just couldn't understand why she struggled so much at school, and because she struggled with independent social interaction, it was explained as anxiety; so I became adept at explaining things three different ways, if there was an occasion for a teachable moment I took that occasion and constantly reinforced and explained.
JESSICA: I would have to say probably the most difficult thing that I've had to learn along the way was my limits, you know, what I can actually tackle in a day, how many tasks I should try to complete, how long my conversations can be, how long I can stay in bright light, just basically how much information I can process, how much stimuli I can take in a day without having a completely overwhelming meltdown, where I can't emotionally regulate anymore or I'm just bedridden for days.
Ultimately I'm still learning how to... deal with those limitations and to get the best out of my days... and it has needed a lot of acceptance on my part to understand what I can do and what I might need help to do, and the order in which I should do things.
SUE: Individuals with FASD can't readily create structure and routine in their lives, they have difficulty with planning and prioritising, they have difficulty identifying their strengths and weaknesses, and without support they can really get into a place where the struggles become overwhelming.
[The prompt ‘How did you find the assessment process?’ is displayed on the screen]
JESSICA: The assessment process for me was long, it felt really arduous, and it was adversarial, often.
[Break in recording]
JESSICA: I was often, sort of, discouraged and contradicted. And I feel being discouraged in that way was quite disempowering - I had spent many, many, many, many years asking doctors and specialists for help, I was explaining that something was very wrong. Often my pathology was simplified when I was actually dealing with something quite complex and I think that lack of knowledge of- that lack of inquiry really delayed this process and delayed a correct diagnosis and assessment, so it was hard… It was hard two-fold, one, that I was already quite unwell with chronic fatigue syndrome, and secondly because I was told that my symptoms were psychosomatic. That I was depressed that my symptoms were psychosomatic and that I essentially needed to get on with it, and I fundamentally couldn't 'get on with it'. It was very hard.
[The prompt ‘What about for you, Sue?’ is displayed on the screen]
SUE: The assessment process was really fraught, it was very difficult to find practitioners who even knew about FASD, let alone would actually assess FASD. It took enormous resilience and fortitude to continue forward and there were many, many tears in moments of rage and despair, and all that changed when we finally managed to get a neuropsychological assessment, and from the results of that we were able to move forward and finally started to get medical practitioners to listen.
[The prompt ‘How did the diagnosis help?’ is displayed on the screen]
JESSICA: The diagnosis has helped me have better expectations about, the idea of how life should go. I was really stuck, and I was really lost about what I felt that I should and could and would achieve and why I would achieve those things, and when it didn't start to eventuate in my life, the blaming and the shame and the self-loathing was incredibly overwhelming, and being able to lift that burden and almost, like, step into the light, like have a true perspective, has just... changed my world. It's really good.
[The prompt ‘How can health professionals better support families after diagnosis?’ is displayed on the screen]
SUE: It was essentially left up to me to find a path, and this is while dealing with the magnitude of what an FASD diagnosis means. I had to deal with my own feelings about it whilst supporting my daughter and her feelings about it. It was incredibly difficult and we felt incredibly alone during this process because there were no supports for an individual who was an adult.
Too often, FASD behaviours are explained as either a motivation problem or a parenting problem, or a character defect and I think it's really important that the symptomology and behavioural symptomology of FASD be more readily understood in order to be able to support individuals who are being brave to actually come and seek assistance, to be able to move forward.
[The prompt ‘What about for you, Jessica?’ is displayed on the screen]
JESSICA: No one really wants to go in and ask for an assessment for potential brain damage, that's not something that just happens, and if someone has come in to ask it's because there's a reason and there's a need, and I was often scoffed at requesting the testing that was needed.
[The prompt ‘Tips for caregivers trying to access support and services’ is displayed on the screen]
SUE: So I would say in a nutshell that it's crucial to understand FASD and how it presents in your individual in order to be able to seek the assessments that are required to be able to prove it, and I'm hoping that as we raise awareness about FASD and raise awareness about how it can present in an individual that people will feel more free and more able to go and seek help from medical practitioners and those medical practitioners will actually be in a position, with the knowledge and the compassion, to be able to help move that forward.