Hello,
I am writing to explain my concerns and worries about IDA being proposed by the NDIA.
As a 40yo Male with level 2 ASD, I am very worried what this could mean for any future support from NDIS and future plans.
I have been on NDIS for the last 2 years and really believe it has saved me from ending my life and selfharm. For the first time in my life I have supports for my disability that are assisting me to cope better in everyday life and not fall victim to abuse or shortfalls in dealing with life that normal non ASD people find routine and normal,
I was only diagnosed with ASD a few years after going through most of life with great difficulty and problems , during my 40 years I had sort on a few occasions to ask doctors what might be wrong and other then social phobias nothing seemed to be identfied and I remained silently frustrated that something was wrong, and I was upset because with my condition explaining things in person with communication seems to fail so I guess many times I sought help the other person didn’t know
What my issues were because I had trouble letting them know.
It is very difficult and embarrassing to admit to strangers you don’t think you are normal so seeking help or even support for ASD is hard for the ASD person to accept unless they feel comfort or find the environment non threatening .
So in my case it is not until 38yo I find a allied health professional I felt some comfort with and I guess her method to identify genuine ASD cases was short sessions over a 4 week period . I felt at ease with this person and they seemed to have a lot of experience with Adult ASD identification, which in itself is practiced in the minority with mostly all allied health ASD experts only seeing young people .
So I was able to seek help from her, and since seeing her as my primary health support and with going through the NDIS process things presently work for me.
This is why I don’t understand the point or need for IDA for a existing participant who has had trouble finding the right person to treat ASD as well as The NDIA application process being no walk in the park, I had to submit lots of reports and documents to verify my condition and needs as well as secondary confirmation of diagnosis, but the benefit of this was I was able to pick my own psychahtrist who I was comfortable enough to sit down with and be assessed.
Forcing a govt assessor who you have know idea of their suitable experience in Adult Autism,
Which is one of the largest suicide groups in Australia, mostly undiagnosed people who just give up as they try to fit in and just can’t.
Nobody sees the internal pain and suffering and energy a ASD person uses to try and be heard and seen.
It is hard to cry out for help and when you get it , it feels a miracle.
I don’t want to be dramatic but as I said at the start NDIS really saved me from attempting to end my own life, and I expended my last amount of energy working with my health team to get the help I believe the system was intended for.
I believe Independent assesements for existing participants is unfair and unnecessary , the mechanism to request changes to suit needs is already in place. And I utilised this service myself on my second plan and found with the right submission NDIA was able to put my plan onto a more suitable one.
So I think the wheel is not broken for existing paraticipants and to subject a Adult ASD person to forced interactions with someone they may be uncomfortable with is actually going to do harm no only to their existing NDIS supports, but the process will effect their mental health, I guarantee you will find many ASD adults on NDIS will be no shows or not participate in a IDA, and I assume this will lead to the cancellation of NDIS .
A normal person will think that doesn’t make sense , but to a ASD person the fear of the experience or trauma they may go through outweighs the logic and and it is classic avoidance behaviour that ASD sufferers use a coping mechanism.
I would support IDA if they were for participants under 18 as these people likely have a parent as a spokesperson who is allowed to do all the talking for them in all situations
This is not the case with Adult ASD people.
So lastly I think the IDA allied health professionals are not going to have the proper experience with ADULTS having ASD to be proper and accurate and having sort help as adult a quick google search will have u searching for hours for a professional with ASD adult practices.
It is not right to do this and I hope people realise what impact this decision is truly having on fragile and mentally ill people.
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