We’d like to thank Stella Sutherland, founder of ABC Autism BAME Community, for inviting us to their second coffee morning since they started up as a new parents/carers group for the BAME community in Haringey.
We also started to register people yesterday to start to organise Haringey families about therapies for their children. Haringey Involve, our official local parents/carers forum, was also there to support the new group.
Many themes were discussed in this coffee morning, the main highlights are below.
Lack of specific diagnoses for autism (comorbidity)
It was mentioned how the USA gives much more than just a simple “autism” diagnose as these might be paired with other neurodevelopmental conditions such as dyslexia, apraxia, hyperlexia, pathological demand avoidance (PDA) and more. These extra diagnoses may help to understand better the needs of the children plus, it could also hint on the best ways of approaching therapies in an individualised and targeted manner.
SENCOs’ lack of qualifications
Parents at the coffee morning wondered about certain SENCOs’ attitude and work. Parents/carers stated that SENCOs were always worried about funding, wondered if they have any training and worry that SENCOs’ didn’t really seem to care for their children or families. Many parents expressed their concern when they found out that a teacher could become a SENCO with barely any training in special needs and disabilities. Moreover, right now at the educational system, being SENCO can be seen as a way to “upgrade” their educational careers, as some SENCOs tend to become deputy headteachers at schools. Therefore, some teachers may use the post of SENCO as a stepping-stone for their own personal ambitions, not because the teacher has a special interest for these vulnerable families.
Parents/carers of children are still struggling to get recognised by organisms such as the NHS
The NHS is asking parents/carers for their personal details for their database, but the form is written clearly thinking carers are those who care for a vulnerable adult, not children. This frame of mind needs to change.
The possibility of asking local councillors and MP to create a “disability card”
When your child or young adult has an invisible disability, it’s really hard to access some services or benefits in the private sector. They will always ask for diagnose letter, DLA (disability living allowance) letter or CLA (carers living allowance) to get a discount or for the staff to make reasonable adjustments. All this, apart from being an invasion of privacy, is also difficult to achieve as you won’t usually carry all those documents with you at all times. If the government would issue disability cards once your child has a diagnose of a special need or disability, it would make things much easier and simpler for our families. Also, something similar should be applied to the Blue Badge as many families that need this struggle to get it.
There’s an “All Party Committee for Autism”
First time we heard about it, we need to check it out.
Amazon Disable Toilet Key
We found out a universal disable toilet key is for sale in Amazon. This may come very handy for those who can’t wait!
These were the most important points at the discussion yesterday. Looking forward to more coffee mornings like this! We will be aiming to attend at least one session a month to show support to Stella and her much needed group.