Recently a federal government-commissioned report, Post-diagnosis support for children with Autism Spectrum Disorder, their families and carers, landed in my Inbox. The lengthy report, produced by Social Policy Research Centre at the University Of New South Wales, makes interesting reading. Its findings are based on a literature review and interviews with 49 parents and ASD service providers in New South Wales, Queensland, Western Australia and Victoria.
One small section in the report struck me particularly. It’s simply titled ‘Autism is expensive.’
Here’s an illustrative quote from a mother:
We will go back to the paediatrician because the other information that the paediatrician gave me—which was really, really useful—autism is expensive. There’s no pretty way of saying it. It’s an expensive syndrome. I mean it can not be, but [it has to be] to improve it so that [child’s name] quality of life as he gets older tends to more towards that normal strain and he does have the ability to get into mainstream school and things like that. (Jill, parent, NSW)
I’ve been thinking about this lately, as it becomes apparent that our family, although well off by general standards —we have a nice (albeit heavily mortgaged) house in a good suburb—has been left behind materially by many of our friends. Whilst our peers sink their money into real estate and prestige cars, we have spent much of our ‘disposable’ income in recent years on ABA ($100,000+), Joe’s private special education school, speech therapy, OT, play therapy, physiotherapy, Fast ForWord, RDI etc. The list goes on and on.
That said, I acknowledge that we are also extremely fortunate, much better off than families who have either sold their house or cashed in their superannuation to pay for therapies, leaving them with uncertain financial futures.
Another quote from the report:
Katrina, an ABA service provider, put it this way: ‘We know what parents need, and what we’re saying parents need costs a lot of money’. Katrina also reported that parents often take on second jobs. This was supported by Steve, who sold his house and took on a second job to pay for intensive, home-based ABA services. Similarly, Mavis said that she works in the evenings to pay for her child’s therapies (not ABA).
But worst affected of all are the many parents who have no assets to sell in the first place. Their children usually have to settle for cobbled-together—and invariably non-intensive — early intervention services, or simply go without. This is heartbreaking and unfair. Yes, the Helping Children with Autism package was a great step forward but it’s not enough.
Cost of therapies aside, the main factor affecting my own family’s income is the fact I have— apart from writing a few books (and unless your name is James Patterson or JK Rowling writing is rarely a way to make money)—been unable to hold down a permanent job since Joe’s diagnosis.
Thus the findings of a study conducted by the University of Pennsylvania, and presented at the 2011 International Meeting for Autism Research (IMFAR) conference, held in San Diego in May, came as no surprise.
Researchers analysed data from Medical Expenditure Panel Survey (MEPS) 2002-2007, an annual survey that collects detailed information on healthcare use, costs, health insurance, health status, socioeconomic, demographic and employment characteristics for nationally representative samples of US households. Children with autism were identified and then matched with their parents, so data could be evaluated.
They found that autism was associated with a staggering 27% reduction in family income. Predictably most, but not all, of this was due to a reduction in the income of mothers.
Among the findings:
- 62% of the mothers with children with autism were employed outside the home, compared with 71% of mothers of other children without autism.
- Mothers of children with autism earned 39% less than mothers of children without an ASD.
Why? Researchers believe that the efforts required to co-ordinate the child’s therapy program take up so much time that someone’s job has to give. And it seems that ‘someone’ is usually the mother. That’s certainly what happened in our household. My husband was the main bread winner so it was my career that went on hold after Joe’s diagnosis.
So we ASD parents cop it from both ends: expensive therapies and loss of income! No wonder there is a push for a National Disability Insurance Scheme in this country.
What’s been your family’s experience? Did autism affect your career and finances?
{ 3 comments… read them below or add one }
Oh definitely. Once C. started school in particular, and his symptoms became more apparent, I had to gradually scale down work to part time. Now, I find taking him to his paediatrician, psychologist, OT, and other therapies, plus extra doctor and dental appointments etc, is almost a full-time job. Then there is the homework and ‘unfinished work’ which comes home for me to help him with because he can’t get it done at school since funding was changed and he lost 8 hours of help a week. This takes a LOT of time, because he’s usually exhausted and over-stimulated from trying to focus and behave at school. When he is home, I have to make sure I’m watching him constantly and organising interesting activities to keep him from misbehaving or melting down, not to mention the need for routines. I don’t know what kind of job I will do when I return to work that will allow me to keep this schedule. And the expense – it kills me! And I beat myself up that I can’t afford better help for him too.
Very important topic, Benison. For most Aussies on typical incomes, ASD therapies are simply too expensive to do at evidence-based intensity. It’s a tragedy… and the govt funding, whilst helpful, is minimal.
More lobbying required, B!
I agree. I run my own business so have more flexibility than most but what happened was after the diagnosis and starting therapy (and seeing great progress) my attention was taken from my business which had been growing (at that point I had 3 staff). Due to the attention being taken away from the business while I focussed on therapy and everything else that goes with autism, the business stopped growing, when staff left for various valid reasons (started own businesses etc), I didn’t replace them and the business has shrunk further meaning that the money has dropped dramatically and now I am doing what work there is just by myself which means extra stress on me. Since he started school, as Bronnie said above, it actually became harder because suddenly there is still therapy and the extra work of trying to keep up and time left for business dimishes even more. This year with some dramas at school, I have been going in to assist, which takes time away from the business again. It is hard and it is expensive (of course he was just that bit too old so didn’t get any govt funding) but the progress has been amazing and that should be available to every child with autism without breaking the parents – the monetary stress can’t be good for the entire family.