When you have a child with ASD, your world changes, dramatically. Overnight. That’s it! You can tell yourself, and everyone else, that you are going to carry on as you always have. You tell them not to worry, you’ll be okay. But the reality is often different.
Family members frequently experience their own mental health issues. I’ve been there; stress, grief, trauma, anxiety, depression, and physical health issues.
Even today, nearly thirty years down the track, I revisit grief. My son’s same age cousins are independently making their way in the world. So, yes, it’s sad for our lad. It’s just not that easy for him.
Families can also become isolated. They learn who their genuine friends are. I’ve seen extended family invite their loved ones (married adult offspring with children) to an outing but ‘don’t bring Bradley, (the autistic child). We want to enjoy ourselves’.
Families can experience difficulties with their relationships and wonder if life will ever have purpose again, (other than caring).
You can lose yourself in translating the world for your child. But you must be his/her voice. If you don’t, who will? The consequence of not stepping up is that the child will suffer immeasurably. Limited development results. If you cannot value your child, how can you expect anyone else to?
And the consequence of working to ensure your child experiences a quality life is that you suffer ‘burn-out’. You can forget you ever had a vocation, goals and recreational pursuits.
Somewhere along the way, you’re going to need support and hopefully, you’ll also find the opportunity to enjoy some respite.
Respite can provide:
- a break away–either by yourself or with others that have similar experiences
- an opportunity to learn through workshops delivered by trained peers, who have also experienced what you are facing daily
- an opportunity to discover self-care techniques that can be sustained in day-to-day life
- time away with your family, including the person with the disability, if you choose
- an opportunity to discuss family needs
If you know what ASD looks like, it’s easier to understand why families require support and respite.
Our child’s experience of ASD was what most people picture classic Autism to look like:
- Hand-flapped but could not point
- Appeared to be deaf (but was not)
- Poor eye contact and limited facial expressions
- Developed some speech and lost it
- Echolalia (later) but no constructive reciprocal conversation
- Didn’t understand language
- Expressed extreme distress with meltdowns, but wasn’t aware of the distress of others
- Didn’t recognise our facial expressions
- Disturbed by changes to his routine
- Self-harmed by head banging or belting his head when frustrated or anxious
- Was sensitive to sound, light, texture and smell
- Fixated on interests to an intense degree
- Limited diet
and he presented with headaches and seizures.
An individual diagnosed with what we commonly call ‘Asperger’s Syndrome’ will experience many of the following traits (though, remember the Diagnostic and Statistical Manual of the American Psychiatric Association {DSM-V} has deemed the term Asperger’s Syndrome to be obsolete, however many people still use it.)
- Delayed social maturity and social reasoning
- Difficulty making friends and often teased by others
- Difficulty with the communication and control of emotions
- Unusual language abilities that include advanced vocabulary and syntax but delayed conversation skills, unusual prosody, and a tendency to be pedantic
- A fascination for a topic that is unusual in intensity or focus
- An unusual profile of learning abilities
- A need for assistance with some self-help and organisational skills
- Clumsiness in terms of gait and coordination
- Sensitivity to specific sounds, aromas, textures, or touch.
So right away, it is easy to see that going on an ordinary family holiday could present with problems. I’ve only known one family that had the income to buy a large caravan and set it up so that the routine would be exactly the same for the child on family vacations as it was at home. The parents slowly assimilated the child to having two homes.
But if you don’t have a caravan or a holiday home in which you can transition your child to a recognisable routine, you could experience vehement opposition and major meltdowns that are distressing for everyone. If the autistic child can’t cope with a different holiday house or hotel each time a vacation presents, despite the preparation you put in, (the what, why, when, where, and how of a holiday, repeat, repeat, repeat!) then respite may be your only option. You go away alone (or with the family) and have carers for the child come into the home.
So, you want to find short-term support or longer-term respite? Or perhaps just like-minded people to share experiences with. Support groups are an essential part of parenting ASD kids. Okay, let’s look at where you can look.
Carers Queensland
Carers Qld provide advice, education, counselling, and support groups for family carers.
A needs assessment of the person receiving care can determine how most carers receive formal respite. For recipients aged 18–65 years, contact Community Access point on 1800 600 300.
The following fact sheet is useful if you are looking for respite for the person for whom you provide the care (so that your time out occurs either at home or away from home for the duration of their respite).
Mable
This online platform is the brainchild of a man who recognised a way for his aging parents to choose their own support workers. With workers in place, the elderly couple could stay in their own home.
It’s not just to service the elderly though. With Mable you design your own programme of support and select carers according to their level of expertise in the area you wish to access. The website lists carers with their experience and qualifications. Clients contact workers and negotiate the rate of pay directly with the worker.
You can pay significantly lower rates than NDIS reference rates. That can add up to more hours of support for you. Mable’s fee is 5%.
When you register, you will have access to testimonials left by previous clients.
You may find workers prepared to stay with your child in your home while you go away, or alternatively, you may want them to take your child on an extended stay elsewhere.
Lifeline
Access to online phone and face-to-face crisis support 24 hours a day, seven days a week.
Autism Awareness Australia
Lists many online support groups. Significant (because they are rare) are those for dads only and for parents of girls. Click on Resources and go to Online Forums/Social Media.
Xavier Place
This is a six-bed purpose built short-term place of respite for children and young adults with a disability. The facility provides:
- fun activities that are age appropriate overnight wake and sleep shifts for the safety of your child
- each room has hi-lo bed & ceiling hoist
- sensory room
- indoor and outdoor relaxation and play spaces
- outdoor cinema for movies under the stars
- registered nurse on call
- staff trained by OTs & RNs
- on-site coordinator
- state-of-the-art security
Wellways
This is one of only two respite care organisations that our LAC could tell me about. The other one, Carer Gateway, I mentioned in last week’s article.
Online Support Groups
I’ve smiled when I’ve read the beginning of some parents’ posts in online support groups. They occasionally start with ‘Hello, Brains Trust’. No one knows ASD like those who experience it every day. It is lovely to see this respect for parents of autistic children and for autistic adults themselves who are walking their journey beside us.
I was from the first generation of parents who had access to an online support group. It was a boon in my life. The advantages were-and still are: -
- convenience, you don’t have to leave your house
- often adult autistics will be in the group. They give opinions from first-hand experience of ASD
- isolation is less of an issue because there is always someone to talk to, even if it isn’t in person, and particularly if it’s an international forum
- it can act like a noticeboard, posting activities, resources, therapies and articles of interest
- a safe place to share the exultant moments and the devastating occurrences
- they are moderated.
Local online support groups
Is respite care available under the NDIS?
Yes, but the NDIS brings a different approach to respite care. It will look at what respite is already being given and why. Does it contribute to achieving the participant’s goals? Are there other supports that might be more suitable?
Respite that occurs in accommodation services outside the family home is called Short Term Accommodation under the NDIS.
Uniting Care–Frequently asked questions.
Finally, support groups often become your social circle. Other friends may not want to understand your new life, and that’s okay, because you need people around you who will understand your challenges and support you as you, in turn, support them.
Written by: Rhonda Valentine Dixon