Hi all, I'm Mandy and I'm the Founder of FIGS.
I’m a married mum of 6 and our two youngest are autistic, Lily is 12 and Ted is 8. It took us 7 years to get a formal diagnosis for Lily and only 3 years for Ted. Constant drs appts being told traits but not enough for formal diagnosis, even now the word trait jars me.
Our pathway to diagnosis for Lily was a long one. We first recognised obvious differences when she was almost 3, yet our concerns were brushed aside. So I turned to Dr Google and the more I read the more I recognised our daughter was autistic. So we started to make adaptations at home and could see this was having a positive effect. Then she started school.
Multiple exclusions, many illegal, followed and we kept going back and forward to Doctors and raising our concerns and no one wanted to listen, one consultant told us she was our difficult middle child and yet we instinctively knew it was more. So we kept pushing and researching until eventually we were seen by someone who recognised Autism in Girls. Ironically she was diagnosed on consecutive days in March 2016 by CAMHS and a Paediatrician, she was 10 years old at this point.
Lily now has a diagnosis of ASC, SPD, ADHD and Anxiety and it took 7 years of having doors shut in our face, our parenting called into question and multiple referrals to get to this point. I don't want anyone else to have to go through that.
I came up with the idea for this group as I felt her and girls in general were being let down by everyone, drs, schools etc mainly because there is a generalised assumption that girls can’t be autistic. It was the last thing considered for my daughter and one of the first for my son and I want that to change.
Lily has had multiple failed settings and this has caused considerable distress, We have an EHCP for both and while Ted is being successfully supported, the perfect school for Lily continues to be elusive. Currently Lily is educated at home to protect her mental health and she is happy. As parents we had to make the tough choice between mental health and education and we chose to protect her mental health, a decision we don't regret.
From the start I had a clear vision and that hasn't changed a year down the line. I want to affect change for our girls , I want the system to recognise the damage it is causing and I want an education system that recognises the many talents and strengths that our girls possess and crucially I want to share information and help for FREE.
The Free part has always been important to me, I don't want anyone to feel unsupported due to a lack of funds or not ticking a social demographic box, Autism doesn't differentiate and we wont either.
We will not give advice and two weeks later phone you up asking for a donation or worst still your bank details for a donation, we didn't spend 100,000 on our logo, it was designed by a members daughter and we won't promote cures or treatments. We share information that is autistic supportive. Everything we do is paid for out of our own pockets as we are all passionate about supporting our girls.
I am very fortunate to have found a team as passionate as I am and they bring many strengths to our organisation. We have a mix of parents and Autistic adults who have been there and yet have dug deep to offer help and support to others and for this I am truly grateful. The extended team is made up of a mix of NT and ND and this is something I'm very proud of.
Our ethos is about celebrating our girls many gifts and talents, we don't want to change them, we want to support them. I want the world to recognise our amazing. awe inspiring girls and see what we see everyday!
Hi I'm Vicki and I'm proud to be part of the FIGS admin team. I'm 47, a parent of 2 and live in Brighton.
In our family there's Jon and I, 17 year old Max and Rory who is 15. (Trans ftm) Three of us are NT and Rory was diagnosed ASD Feb 17.
Rory is awesome. However they have experienced some real and significant Mental Heath difficulties due to undiagnosed autism and being at mainstream school. We got an second EHCP in July 2018, and our Local Authority have no suitable local provision. However, Rory finally, after much debate, has a place at an incredible (independent) specialist provision, and has been attending since September 2018. It has been a game changer to have a setting that is so geared up to each and every students individual experience of special needs. Rory is 'High Functioning Autistic' although we all hate that label. Rory also has diagnoses of OCD, PTSD, depression and anxiety disorder, hyperacusis and misophonia.. They have a range of sensory difficulties and experience selective mutism. Rory likely has EDS is finally in receipt of physiotherapy to help cope with the experience of chronic pain. Rory experiences the world differently, but in my opinion, being autistic doesn't mean you have to suffer with debilitating mental health problems. I hope for Rory to be a healthy autistic adult, and to have other incredible autistic people in their life to help guide and nurture them. I also believe that a positive way to create a mentally health future for autistic people is to have autistic advocates defining an 'evidence base'. I want my child to be part of this movement and am extremely uncomfortable with any interventions like ABA which force ND people to confirm.
I joined FIGS to help raise awareness and understanding of autism. My learning curve has been really steep. Problems only became really apparent for Rory when they started secondary school. By February of yr7 it was obvious they were suffering; by July yr7 they were in hospital with suspected anorexia. It was only by chance that Rory was seen by a member of the hospital Mental Heath team who had experience of both anorexia AND autism in girls. He highlighted the possibility of autism, which had never crossed our minds. It took a further 7 months for Camhs to diagnose, and since then it's been a fight every step of the way. For appropriate understanding, for acceptance of the significant issues that Rory experiences, and for mental health issues not to be seen as simply part of the landscape.
Rory had been out of education since Nov 2016 (yr8) and finally re-entered a safe and appropriate educational provision for the start of Yr 10 in September 2018. This is Rory's 5th type of secondary school education - Mainstream #1, EOTAS, Self Managed Learning, Mainstream #2 (which was wonderful but trigger a rapid MH decline) and finally this Independent Specialist. There is no appropriate provision in our local area for 'high functioning' children.
I joined FIGS because I want to help raise awareness of autism as it presents in biological girls. I don't want it to be pure chance that someone might recognise the signs and take girls off inappropriate pathways - in our case, Anorexia - if indeed they are put on any pathway at all.
I want schools to spot the signs sooner and work with parents to provide interventions, I want LAs to recognise that our girls do need EHCPs. I want information about autism in girls to be present at every stage of teacher training. I want 'school refusal' to be taken as a serious indicator of anxiety and stress.
My child is incredible and deserves every support. They deserve a safe and appropriate education. I want our fight to be worthwhile in that it changes perceptions and leads to positive intervention.
I'm proud to be part of the FIGS campaign which sits alongside the incredible support groups which exist both online and offline. I can't wait to see what we can achieve together.
Rory blogs on YouTube as Not_So_Neurotypical