Lobbying for inclusion

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I've spent my morning lobbying two organisations - one that provides services here in New Zealand for autistic families (primarily) and young ASC people, the other that offers services to the aged. Neither offer any services to ASC people in later life; they don't even acknowledge our existence.

To the second, I wrote:


"Age Concern could become inclusive of older people who are on the Autism Spectrum, possibly by partnering with other stakeholders.

Because of communication difficulties, older AS people - some high functioning Aspergers Syndrome, some more frankly autistic - are one of the most marginalised and ignored groups at all ages, but even more as old people. The suicide rate in this group is extremely high, and AS people are amongst the most bullied and marginalised throughout all of their life stages. Autism NZ also ignores aged AS people, so Age Concern is not alone in that.

There is no appropriate support provision for them, which sends a message that they are not worthy of attention, inclusion in services, acknowledgment or support. That contributes to the high suicide rate.

I work with AS people and have done so for years online. I know the issues in and out. But Age Concern seems to be completely unaware of the situation and the need for provision and inclusion.

I don't expect action will be forthcoming though at least I would like to make you aware of the situation".

I know from experience that their response will most likely be a polite fob off - "thank you for your concern" at best. I'll post their answer here if and when it comes.

The neglect by Autism NZ concerns me more. I know from previous correspondence that their response is to expect older aspies to fit themselves into groups designed for much younger people. I am "rude" enough to challenge that concept of service provision, especially to an organisation that declares itself as serving "all autistic people".

They really would like "mosquitoes" like me who challenge that myth to go away and die - sooner rather than later!

On behalf of other parents here on WP just wanted to thank you for your advocacy - but I'm afraid most here aren't appreciative of the efforts many of us as parents have to do to lobby on behalf of our children. I think it's a thankless task,

I agree, it is a thankless task; fortunately I am not motivated by the unlikely prospect of thanks! I do it because its my perception that it needs to be done, and I have the time, and the ability, to do it. It's better for my own wellbeing than doing nothing, so perhaps it is actually also selfish.

My parents do a lot of lobbying. Helped get some things changed or at least improved.

That reminds me of my son - a bit of an off topic story, but anyhow..

When he was a teenager about your age, I was incredibly stretched - flying around the country to speak at conferences, present submissions to parliament, planning sessions with policy makers, and support work which involved receiving hundreds of phonecalls a month when I was home. (None of this ASC related). Five calls a day of about half an hour each were standard. I provided support and counselling for free, it was before everything had to be a consumer item for a consumer society here; these people had been badly treated and wanted help and I was able to give it then.

Years later, when my then teenage son was in his late 30s, I discovered that when I wasn't home in those years, he not only answered the phone calls but provided the support and counselling in my absence ! I was astonished to learn this, though he was a really good hearted young adult. He explained "You see Mum, I had heard what you said so many thousands of times that I knew it off by heart, and people really responded well to being heard and validated".

He is a BAP, and he is now much older and in a career where being able to talk to, support and encourage people is vital in his management role.

So I wonder where your parents example might take you! Wherever that may be, be kind.

Unfortunately my abilities are pretty limited.

What is your definition of inclusion,and what are you or they or whoever lobbying for?

What does it mean to be autistic,does anyone really know?Nobody knows,do they ?

I have been on this so called support sit for 10 years and I have never felt included.

What are autism advocates advocating for? Do they even know?

I'm lobbying for A SHARE of the funded provision of services designed for people with ASC issues from the organisations who already receive Government funds to serve specific populations, in this case the aged (Age Concern) and the AS populations, (Autism NZ) for those who fall into both categories.

This is my money as a taxpayer that these NGO funded organisations are allotting in a way that excludes adult AS people.

I am also lobbying because no other organisation is serving their needs either, and firmly believe that this total neglect really should concern us. Action, advocacy, activism can be powerful factors in the effort toward starting a dialogue with stakeholders and raising awareness.

It may appear so but not always. My lobbying of my daughter's primary school back in 2010 paved the way for the school admitting other autistic kids who had the resources/staff now in place. In my daughter's time it required me to have meetings with the principal to advise on how best to deploy available resources and ask for money in the school budget from the education department which could used to pay for upgrades/safe rooms etc...the parents who came later would have assumed the school was prepared for their needs without realising who had done all the hard work.