Leaving behind an adult son on the spectrum

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What if you're a Baby Boomer thinking about retirement and you have an adult son or daughter on the autism spectrum? What if they're going to need supported living when you're gone?

Male silhouetteIn October, my son turned 25. On his birthday it's okay to have a particular cake but it isn't okay to have candles or sing 'Happy Birthday'. It's okay to have a present he nominated but it isn't okay to have surprises or fussy displays. Birthdays are very low-key in our house.

This might not sound like a terrible problem, but this lack of flexibility and seemingly perverse preferences are the norm. Weathering a change or adding a new task to his routine takes a multi-pronged strategy and patience. He often finds peoples' good intentions intolerable.

This means that my son is not everyone's idea of a great housemate, but he'll need supported care in the future that understands autism. Worryingly, after the school years, there's a gap in support services for many vulnerable adults. This results in some young people living in aged care. It's not good enough for them to be on the resource scrap heap.

In June, Senator Pauline Hanson suggested autistic children didn't belong in mainstream classrooms. Her alienating comments demonstrate her ignorance of how few options there are and how greatly the pathways to support vary.

Sharon Knight, MLA for Wendouree (Victoria) and mother of 28 year old Tom, with autism, says, 'Tom's disability was so apparent that there was no question about him getting services ... Support agencies advocated for us. And that was so important ... I feel really sad and angry at times about those families that have to mount that argument in a very direct way.'

Services are stretched. My son was discharged from services simply due to the loss of staff in the public system. Success with applications can come down to what a doctor emphasises in their report. At eight, he could reach out and place a piece of bread in a toaster, so the doctor ticked the 'prepare a basic meal' box. The successful second report for Centrelink was done by an occupational therapist, emphasising difficulties with anxiety and following instructions.

 

"With one in a hundred children getting an autism diagnosis, and autism accounting for 31 per cent of NDIS participants, how can we not come to grips with the fact that lifelong support is necessary?"

 

Navigating services can be a bureaucratic part-time job, a strain on relationships, and exhausting. I was told by a support professional that I shouldn't 'get bogged down in the future. The community would look after him,' she consoled. I was limited to working part-time because there was only ten hours of school support. I was already wondering who might be able to take over my caring duties. Is it okay to expect a sibling to step up? I was calculating costs, researching State Trustees and vulnerable beneficiary wills.

In SHUT OUT: The Experience of People with Disabilities and their Families in Australia, one of its contributors says 'the government thinks that once disabled children turn 18, they all of a sudden find independence and need less support ... ageing parents, being haunted by the thought of what will happen to their children when they are no longer able to provide a high level of care and support, was a sad recurring theme in submissions'. This burden of concern is unfair.

Last year, Maria Thomas' son, Matthew, was attacked in a state-funded group home in Melbourne.

Knight thinks there's a special type of person suited to assist people with autism. 'Tom doesn't have any language at all so we need to really trust that the staff is caring for him.'

There are fewer, if any, autism-specific facilities in regional areas. So how young is too young to live in a nursing home? Local GP, Jim Thomson, says 'I am unaware of any supported accommodation resource in the Ballarat area. This, along with other chronic issues for young adults, is a desperate area of need.'

I keep hearing that autism support is expensive. With one in a hundred children getting an autism diagnosis, and autism accounting for 31 per cent of NDIS participants, how can we not come to grips with the fact that lifelong support is necessary?

Speaking about this topic is difficult because I have to consider my son's privacy. Like with most issues around autism, it's been a project of compromise. But I don't think I can afford to be silent. My son says 'I think about the future and what's going to happen to me.' I do my best to assure him that I'm going to have everything in place, but it's extremely hard to plan for the future when support is so hard to get.

 

 

Jennifer PontJennifer Pont is a part-time carer, part-time student and part-time education worker from Ballarat, Vic.

 

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Topic tags: Jennifer Pont, autism, NDIS


 

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Existing comments

Thank you Jennifer for these comments on a serious problem that needs urgent attention.
Rena Clark | 13 November 2017


SEnator Hanson's comment that "autistic children didn't belong in mainstream classrooms. Her alienating comments demonstrate her ignorance of how few options" is symptomatic of her whole political approach. NO solution just Froth from mouth about others" NO Catholic should contemplate voting for this woman who is an opponent of nearly all aspects of Catholic Social Justice teaching.
Andrew Jackson | 13 November 2017


A similar situation exists for adolescents and adults with severe forms of illnesses labelled mental. (Most, if not all of these illnesses have a physiological basis or bases. Why is the word mental used?) Years ago, proactive services were available to people who needed them. Now clients are discharged from services when they still need considerable support. Families worn down by attempting to do work that should be done by professionals and themselves unwell or/and ageing are abandoned to impossible situations.
Sheelah Egan | 13 November 2017


Thank you for exposing some of the barriers that confront parents when seeking answers or a solution for their children's future care. This is an important contribution to what is an ongoing (and exhausting) task of raising awareness to this issue.
Andrew | 13 November 2017


I certainly feel your pain, Jennifer. Our son is 21 and my wife has already retired and I am due to retire in 3 years. My wife could not continue in her job due to the stresses it added to her life apart from what our son causes. We live in a small country town and it has very cheap houses so we were able to take out a mortgage at our age and put him in a small 2 bedroom house. It was impossible to keep our sanity with him in the same house. No one would be able to live with him - in addition to autism, he has OCD, anxiety (comes with the territory) and mild intellectual impairment - just enough to enable him to have outlandish opinions and be able to buy things he cannot afford so we are continually bailing him out. We are at the end of our tether with him. We have a daughter but we could not possibly ask her to take over his care. He gets support workers in for about 12 hours a week but they are of variable use and we still need to tend to his needs. Tonight after a long day I visited him and also spoke to him on the phone for reasons I don’t want to elaborate on. The NDIS is held out as our hope because supposedly he will get all the support he needs but it will rely on the integrity of the people who will provide services. Having experienced with relatives first hand how they have been treated by employees in nursing homes so that I wouldn’’t wish that on a dog, I have grave doubts about how all that will work out. God help us all.
Frank S | 13 November 2017


I know that some people on the spectrum are doing really well. Some, like Sharon Knight's son, are clear candidates for services. But there are some of us in the middle. Believe me, parents are working hard on developing life skills. And, like Frank, trying to make their own solutions, within financial constraints. Superannuation forecasts don't include a semi-dependent adult child. I've just read about ethical investment and a model of small clustered supported housing. I don't think it's in Ballarat yet but I'm asking questions. I think mental illness is definitely another area where there are serious gaps. When talking about adult children, parents have more desire to help than they have rights. These topics aren't popular but they're important. Numbers are growing. Any shared knowledge is very valuable.
Jennifer Pont | 14 November 2017


What a fantastic article! Unfortunately, people in this situation are often ignored because it isn't a pleasant thing to think about, which is disgraceful. You write with a lot of grace, I look forward to reading more of your work in the future.
Laura Wilson | 14 November 2017


Hi Jennifer, great article - I hope the landscape of support changes for the better very soon.
Michelle Sadler | 14 November 2017


It is important that children and adults with autism are given the resources and support to live as normal a life as possible. It is there right. If they do not have the living conditions there to support them, how are they meant to thrive? Thank you for speaking up for so many people who share the same experience as you. You have bought a really important issue into focus.
Sophie | 14 November 2017


A decent quality of life and support should be a basic human right and entitlement. Our governments over the past few decades have stripped back options and choices for families who have a children or children with a disability. Politicians are so shallow with their comments and commitments from all sides of politics. Pollies pay packets have not shrunk though! The cutting of direct services to people with disabilities is a bad social experiment with people lives. An absolute disgraceful situation her in Victoria. Where are the advocacy services and voices for families and folk with disabilities?
Mark Cisar | 16 November 2017


While I think all of us can appreciate that resources are stretched, it's disheartening to see how little mid-way support there is for people facing disabilities, especially when their condition is persistent and they will need that support over their lifetime. Community-level support is crucial to ensure quality of life. The 'all or nothing' approach isn't working.
Rebecca | 16 November 2017


Thank you for this article. It articulates issues which are hidden to most. Everyone deserves the support to flourish and live their best lives.
Alison | 19 November 2017


Jennifer how well you have approached this subject. I can only imagine your feelings and thoughts in relation to your son's future. It's interesting when reading about the range of services available .. support packages, support accommodation etc. It all sounds straightforward on paper but I have seen first hand via family and friends, the frustration when trying to access support and convey the needs of the individual. In the case of Jennifer's son, how loud does she need to shout for authorities to grasp the situation?
Shirley Morgan | 20 November 2017


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