In the earlier days little was known about the autistic conditions themselves, and very few parents and professionals knew much about evidence-based practices. Not a good idea. Philosophy, theory—not a lot of either was about. Both exploded in Ireland pre-and post-turn of the century (remember the Millennium???). Regardless of the current economics, we still have these critical ‘resources’.
Philosophy—Know the condition and how it is affecting the individual; provide intensive early intervention from time of diagnosis; follow Person-centred planning values; think age-appropriate, natural settings, and community-based; focus on functional life and social skills; do not place a ceiling on expectations.
Theory—Understand the function of behaviours before intervening; teach through behaviour analytic strategies paired with visual organisation supports; teach pivotal skills; identify and use motivators; include choice options; base curriculum on individualised assessment outcomes.
Regardless of the level of funding, we can incorporate these to some extent into the educational and support plans for children and adults on the autism spectrum. Focus on the most critical elements when identifying goals—those that (when learned) will generalise to other areas, fostering on-going progress. Not only at the start, but all the way through to university, insure good basic learning habits are acquired and followed and work towards reducing identified barriers to learning and self-sufficiency. Make learning sufficiently challenging, rewarding and fun!
The real world
So, back to the real world. How do you do these things without skilled manpower: teachers with specialised training and materials, speech and occupational therapists, psychologists, behaviour analysts, tutors, SNAs? You prioritise, you read and learn, finding the most relevant instructional directions for the most important aspects of the curriculum. If you’re a parent, you speak with other parents, you advocate as much as you can for your child on the local level (School, SENOs, ASD or CAMHS team), and at a national level (DES, HSE, Ministers, TDs). You’ve been doing this anyway. Unless you were lucky, you’ve already been faced with clinical positions being left unfilled (in some cases for years), and with some good teachers with good will but little background in this specialism. What’s new is that the
This is not a time to try new things or to advocate for approaches that have not been proven to be effective. We need the best bang for the disappearing buck. Parents in Ireland have spent thousands of euro on some ‘interventions’ for their child that have no scientific support whatsoever. Anecdotal reports are not ‘evidence’.
funding not only to maintain the level of service delivery that existed is markedly reduced, but that the likelihood of future developments is markedly diminished. Scary stuff. Materials and manpower, keeping up with international findings and best practices are out of reach. This is the price to be paid for the economic follies of others.
The push for improved practices and services should come from within the system and professionals should never be satisfied with what they have been offering, always striving to improve. Progress in disabilities in all English speaking countries and probably throughout the world, however, has always come from parents. Pity, as parents are already under a great deal of stress. Society should be making it easier, not harder, to parent a child with a disability or to be a person with an ASD. What you can do is to get the available professionals to stand with you; to support you in your efforts to get your piece of what’s left of the pie. Form a team around your child as best you can, understanding that the availability of members will wax and wane. That doesn’t have to be a bad thing if you’re able to draw on everyone’s strength when they are on board. Of course, not every parent has the emotional or physical energy or the time to do these things. No parent should be in the position to need to do so, but that’s where we are. Get other family members and friends to lend a hand, make calls for you, implement interventions from time to time, etc.
Using scarce personal resources
The role of philosophy and theory becomes more critical in these lean current times and both point us to evidence-based practices. This is not a time to try new things or to advocate for approaches that have not been proven to be effective. We need the best bang for the disappearing buck. Parents in Ireland have spent thousands of euro on some ‘interventions’ for their child that have no scientific support whatsoever.
Anecdotal reports are not ‘evidence’. Results of well.designed and professionally peer-reviewed studies are. Check the facts. Ask for references in the published, peer-reviewed literature for what anyone recommends for your child. I recall once asking this of a well.advertised Institute for Light Therapy, and when I never heard back from them, that told me what to think of this highly acclaimed (by themselves only apparently) ‘intervention’. If you have a bit of money to spend, get someone qualified, a Board Certified Behaviour Analyst or equivalent, to work collaboratively with teachers and families to develop personalised, evidence-based teaching strategies for all involved to follow. Focus on what’s most important and limit the number of goals at any one time to allow for an intense focus. As one goal is met, add another and keep moving on.
Florida, where I spend most of my winters now that I’m closing in on the free travel pass, has an interesting system where that State actually allots a set amount of money to a person with a disability based on their stated needs. The individual and/or family then gets to decide how to spend it! Who to hire, engage with that what they’re doing has validity for that client and they must also submit ‘progress’ reports to secure on-going funding. This reduces the likelihood of financial waste on unsuccessful approaches or services that those with an ASD or their parents find aren’t helpful. This system has its drawbacks, of course—as any government programme does—but it’s something to consider and possibly advocate for to make the best use of the limited funding being imposed on you.
So, it’s tough times, but times are always tough for those affected by an ASD, whether you have one, are the parent of someone with one, or work with folks on the Spectrum. So, put some self-care strategies in place for yourselves. You need it. You deserve it. You are the best bet for the future success of these kids and young adults. Two steps forward, one step back. The bankers and some government officials have put you in the back step right now. Don’t let them keep you there. Eyes forward, heads up, and keep the pressure on them to do the right thing and support everyone in need on the Autism Spectrum.