This Blog applies as much today as when it was written first in 2016.
So here are our views mine and Fionn’s, on being diagnosed as “autistic”.
This is Helen (mum) here – for several reasons.
The first is Fionn has not been well with a headache all week.
Secondly this is as important to ME as to him.
Statistics about autism diagnoses falling further and further behind. Currently in our local area 217 children are awaiting the assessment for diagnosis.
This WAITING LIST makes me BEYOND angry. Diagnosis is NOT a handbook on the “easy tips on raising your child with autism”, BUT diagnosis is the beginning :
- an entitlement to help,
- an entitlement to advisory services access,
- an UNDERSTANDING of why your child is different- not wrong.
- a START to you and them on the rod to providing best you can for him.
- And even an acknowledgement that you weren’t just a fussy mother!
Fionn is now 15 and managing well in a mainstream world but not without US.
Growing up for an autistic child is a constant stream of “new situations” which he needs help with when he meets changes.
- But without HIM knowing WHO he is, and
- WHY he needs to ask us extra questions about what may seem normal to others,
- WITHOUT his acceptance and enjoyment of his “autistic” or “aspie” traits,
- life for him, and for ALL of us, would be incredibly different, and without doubt,
- more difficult!
THIS is a blog we both wrote on the IMPORTANCE of having that assessment. EARLY.
i love having aspergers.
i love my differences.
I now love the bits of my personality it gives me.
But the new tests they are going to use when they diagnose people will never say people have aspergers.That really makes me so angry.
by knowing i had aspergers i understand WHY i do things…and then i let my principal explain with m to a few friends that it was just how I am…and then we told a few people outside my class . When your friends KNOW, they know you are a bit weird, no problem. They be looking out for you a bit. They don’t wonder what you are at.
When I went to secondary school mum and I agreed we needed to tell my new class. So form teacher did this at beginning of year. She did this thing where she told us something different about HER…and then we all did it in turns. Some people had medical conditions, some had won things. I said i had aspergers and it made me a bit different but that i could do everything in my own way. NOBODY has given me any trouble about it.It’s just ME!
IF I DIDN’T HAVE MY DIAGNOSIS MY LIFE WOULD BE VERY DIFFERENT….i think.
- I wouldn’t understand myself
- i LOVE being who i am and how i am!
- Mum wouldn’t understand me
- Mum and Dad would not have made me try to mix the way they did.
- I wouldn’t have friends
- I would NOT be able for team sports
- i would still be very clumsy.
- I would not be able to work in group-work in school
- i would have have had no assistant in my schools
- I wouldn’t be writing on this blog as I wouldn’t have this blog
- I wouldn’t have extra help in anything
- I probably wouldn’t be as good in school cos teachers wouldn’t “get me”
- I would be really antisocial and unable to mix
- I would be socially awkward and feel weird
- I would not know why i was different and that would be hard!
- I wold not be able to explain to my class i was different cos i have aspergers.
- I would maybe be bullied
- I might have had no choice in going to ordinary school cos i might not have been able to cope and maybe would be at a special school.
- my life could be so different
- and not in a good way!
my LABEL is information.
it explains my differences and then I can learn with help how to manage them.
Fionn doesn’t SUFFER from Asperger’s Syndrome. (from Helen)
He isn’t an autistic boy.
He is boy who has blue eye, fair wavy hair, a big smile, a sister and 2 brothers, and has aspergers….it is a PART of him – and a part we love.
We DO have to explain rules of :
- social situations,
- appropriate responses,
- small talk,
- times NOT to speak,
- subtle social cues at this stage so that Fionn can manage a “mainstream” situation.
It’s another LEARNING for him.
NOT an attempt to change him one bit – purely a way to help him in a situation that he doesn’t naturally understand.
His learning is ONGOING, but when he has learned a “new situation” as he calls it, he retains that information for the next time….not a lot different that another subject in school – except it’s MUCH more important.
LOTS of people ask “how” and “when” we told Fionn he had aspergers.
We do not profess to having been told to…being told how…but in the same way that if your child asks you why he can’t run quickly you could explain he has asthma – that means…X, Y and Z BUT you are still YOU!….
These blogs we wrote over time in answer to parents questions.
in OUR case, it seems Fionn found understanding himself like fitting into a puzzle he had already got in is mind. It fitted him. he is confident and HAPPY to be different and haooy to be HIM!
Explaining himself to others is second nature now. It’s definitely stopped people wondering about him, and been a positive piece of information to us and him.
i HOPE these help other parents.