I was finally diagnosed with FASD at the National Clinic in 2015, but I have had symptoms all of my life. My birth Mum drank and in September 2003 my sisters and I were taken into care when I was 15 months old. I have lived with the same family since then who are now my Special Guardians. Addenbrookes identified my FASD in 2009, but I received no support.
Before 2009 my life was very complicated. My first Primary School teacher described me as being lazy, defiant, obstructive and evil when I was in Year 1. My GP knew nothing about FASD, even though it was suggested at my adoption medical.
We moved in 2009 and we had a new GP who is an adopter with a son who has FASD. The new head at the primary school was also an adopter and her daughter behaved in much the same way as me. Both of these adults understood me and tried to put things in place to make my life easier, but not enough adults in my life understood enough and life is still a challenge for me.
Even with a diagnosis, Pupil Premium Plus and an Education, Health and Care Plan I was physically unable to get into school last year, my final year of GCSE’s. Although the school SENCO tried hard to support me, my school deregistered me without any support from the County Council. I spent 6 months with out any educational support. Tutors were appointed less than a month before I was due to take my first exam. It will be no surprise to you that I have no GCSE’s.
Through all of that time my parents, SENCO and GP had been asking for CAMH’s support. I had been discharged by CAMH’s at the beginning of Year 11 because the Psychologist left her post. It took them 6 months to get some one to see me. Too little too late. I saw CAMH’s last week and they really told me that its not really their job to support people with my conditions. They couldn’t tell me whose job it was.
So, I have care experience, but no social worker. I am on a college course that really is too easy for me and this frustrates me. The only real support that I get is from my family. At college it is just like going back to the start of every School that I have ever been in and I have heard my Dad saying the same things to teachers again. The teachers then go and do ‘some research’ about how to teach people with FASD, but they never ask me or believe me.
I am blamed and punished for things that I can’t actually help. There are things that I can’t do but lecturers believe that I choose not to do them. I struggle to understand body language and gestures and take things literally. I say things exactly as I see them. But I do take great interest in things like History, which I research, but can’t study as I don’t have GCSE’s. I can do things like this with the right support.
Sadly, I know that what I have experienced is not unusual. The results of this PhD research show this. My foster brother aged 10 has also been diagnosed by the National Clinic, but the advice about him is being ignored because people don’t have the knowledge or understand about FASD. He cannot even get an EHCP at the moment. My older sister has just started the process of getting the challenges that she faces identified as FASD.
What I want is people who know about FASD and can make a difference.
People who listen to those who struggle. I know why I am different, and I know what works to help me to achieve.
People who are committed to working with parents / guardians and carers to support them
People who understand the effects of FASD on minds and mental health and will support not make things worse. And mental health services who recognize and have services for those affected.
People who will not give up on affected children and will support them growing up and especially at transitions and into adulthood.
Real support for those of us with care experience as it adds to the challenges that we face. Despite the steps and progress made for children in care and adopted kids I have not been able to access the support
And finally, not to be blamed for my conditions, especially when people have been told how these conditions affect me.
There are still too many ignorant people. You wouldn’t tell someone off who is blind because they can’t see, but I get told off most days for things I can’t help.