People often say that once they become parents, they never stop worrying about their child no matter how old they become.
There are worries about their children adapting to school, making friends, navigating the choppy waters of adolescence, all the way through to establishing a career and having a family of their own.
For parents of children with a diagnosis of autism, there are other things to worry about: The type of support their son or daughter may receive, and how long this support is likely to continue for, as examples. There are certain phrases that may create particularly stark worries for parents. These may include “panel”, “package review”, and “needs assessment”.
Many parents of individuals with a developmental disability will be used to the constant struggle to secure the right educational placement, a water-tight Education, Health, and Care Plan (EHCP), and a package of care that truly meets the needs of their son or daughter.
"Transitioning" across the system
One particular struggle comes when the young person becomes an adult. This is a particular minefield as some local authorities are now “all age”, others have “transition teams” that go up to 25 years, whilst others have traditional “children” and “adult teams”. In other words, a family in one Local Authority (LA) may lose a long-standing social worker once their child turns 18, whilst in another LA this consistency remains beyond 18. Potentially changing a social worker can be stressful enough, but adding into the mix the ending of secondary school education can make this seem an insurmountable hurdle.
The term “transition” is often used for young people with complex needs. Transitioning from one service provider to another. Transitioning from a primary school into a secondary school. But the transition from childhood to adulthood, which often coincides with secondary school coming to an end, is one that receives particular attention. A lot is being done. A lot more remains outstanding to do.
It is important to acknowledge some of the main difficulties facing parents, families, and young people themselves. Without fail, a recurring worry is what colleges/further education provisions there are for individuals with developmental disabilities. It is no secret that 1) there is a lack of designated provisions, and 2) there are even fewer specialist provisions.
Beyond that, for those lucky enough to get an appropriate placement, concerns remain: Will the level of support be sufficient? Are school in a position to facilitate a transition? Will the peer group be appropriate?
The next pathway
College or continuing education may not be appropriate for everyone. Moving into supported living may be the next major milestone for many young people and their families. Identifying a care provider that is able to meet a young person’s individual needs is vital for families and local authorities alike. Regular community access that includes vocational pathways may be seen as the number one priority. Voluntary or paid employment may be the long-term goal for others.
What is clearly needed, in spite of what priorities may be for transitioning into adulthood, is a robust and person-centred programme of support for the young person.
We argue that this should not begin in adulthood. This should be a continuation of what is already in place. To explore this, it is important to focus on some reasons why a transition should not wait until adulthood.
Many of our clinical team have worked in schools previously – be these in ABA schools, mainstream schools, residential schools, pupil referral units, and so on. A common theme is that transitions are often rushed and therefore do not typically go smoothly. There are many reasons for this, but a recent SEN School Report (2016) by the National Autistic Society seems particularly pertinent: Over 60% of families felt that their son or daughter was not receiving adequate support in learning daily living skills
Responsibility should not lay solely at the door of schools. Home care workers, families, as well as educational providers, should collectively focus on adaptive living skills for young people with complex needs. Having spoken to many parents, it is clear that they want their son or daughter to live as independent a life as possible. Is there much use in teaching a 16-year-old multiplication tables if they cannot prepare a simple snack for themselves or brush their teeth independently?
At the heart of this is a question of social significance.
Applied Behaviour Analysis (ABA) can be defined in a number of ways, but one of its defining characteristics is a focus on socially meaningful behaviours (Baer, Wolf, & Risley, 1968).
As practitioners, we argue that there is little merit in teaching things arbitrarily. The focus should always be on making meaningful differences to the young person’s and his/her family’s life. A good ABA practitioner will sit down with the family and young person as appropriate, discussing and identifying current barriers and future targets. Targets should be socially meaningful and appropriate.
Our scientific approach argues that social validity may not be sufficient for effectiveness but is necessary to effectiveness (Baer, Wolf, & Risley, 1987). The key questions should always focus on why particular skills are being taught, and if acquiring this skill will increase the independence of the learner.
If these questions cannot be answered comprehensively by the young person and/or those in his/her life, it is likely that what is being taught is not of social significance.
At the heart of a young person’s transition are the skills in their repertoire and the likelihood of these skills generalising to new contexts and new people.
These are two related things:
1) Teaching skills that are socially meaningful in order to increase independence, and
2) Promoting sufficient opportunities for these skills to generalise.
When we speak about the generalisation of skills, we talk about it in three ways: across time; across people; across contexts. How often do you hear a teacher say, “he never behaves like that with me”?. Our response is always the same: “I’m happy he doesn’t behave like that with you. But if he’s still behaving like that with other people elsewhere, then he hasn’t generalised these behaviours”.
How does generalisation work?
A simple example to highlight the difficulties of a lack of generalisation is around hand washing: A young person may be perfectly capable of washing and drying his/her hands at home. Let’s assume that at home there are those taps that you turn to have the water flow, there is a bar of soap that you would use to wash your hands with, and there is a towel to dry your hands on.
If a young person always washes and dries their hands in this particular way, they may struggle when out in the community: A public toilet, for example, may have taps that use sensors to activate the water, may have soap dispensers, and may have a hand drier or paper towels. If a young person has only ever learned to wash their hands at home, they may struggle in replicating this skill in a public toilet. In other words, he/she may not be able to apply what they have learned to a slightly different context. That is, he/she may not be able to generalise.
One key reason why many of our clinical team joined Beam was that they felt that schools did not have the sufficient resources available to promote generalisation of skills being taught. The reality is that it is difficult for schools and families to collaborate in a meaningful way: Parents may work full-time, the school may design interventions that are difficult to replicate at home, and so on. Many of us have worked in schools and have seen the surprise and delight of parents when their son or daughter does certain things in school that parents did not think was possible. But at that stage, the good work is only beginning.
For this change to really be functional and meaningful, it has to generalise to the home and to the community.
We can all do more to promote this. Better communication between families and the school would help, as would opportunities for home care staff to meet with school staff to share ideas. Local authorities, SEN teams, allied health professionals should all ensure they are promoting and sharing best practice. Sharing video footage of skills being taught, giving feedback on particularly motivating items/activities, and thinking about long-term outcomes should all help. The focus should not be on what can we teach a young person today.
Rather, it should extend to what can we teach a young person today that will lead him/her to live a more meaningful and independent life.
An equally important defining characteristic of ABA is that it is individualised. There are common teaching principles and strategies – reinforcement, task analyses, data collection, for example – but how these are applied will be highly specific to the individual. This relates closely to our discussion on the transition into adulthood: For individuals with a developmental disability, one size does not fit all.
We may work with two 19-year-olds, for example, but have two distinctly different areas of focus. One young person may be highly motivated by animals, and so a trip to a safari park on a weekend as a reward for attending college all week may be appropriate. Another young person may have no interest at all in animals, and such an outing would therefore not stimulate them in the slightest. The principle of individualisation holds true for skills to teach and behaviours to manage.
Is enough being done to prepare young people for their transition into adulthood?
According to a recent UK study, 70% of adults with a diagnosis of autism felt that they were not getting the help they needed from social services (Bancroft, Batten, Lambert, & Madders, 2012). These statistics cannot be ignored, and clearly, there is a need for additional resources to be made available. However, it is important to reiterate that transitioning should not wait until adulthood.
Teaching skills of social significance, in an individualised way, whilst ensuring we have programmes for generalisation is simply good practice, and should be incorporated into a programme of support irrespective of the young person’s age. Indeed, the younger the age that this type of support can be provided, the more sustainable the progress (Ospina et al., 2008).
Transitioning to adulthood can be a stressful experience for anyone.
This is often even more difficult for individuals with a diagnosis of autism and their families. Clearly, there will be ongoing battles in terms of securing appropriate funding and support, identifying safe and effective educational provisions, and/or getting onto waiting lists for supported living or residential placements. Young people are entitled to receive a level of support that meets their individual assessed needs. We have seen ABA programmes of support that can work for such young people, and argue that a highly individualised approach that focuses on socially meaningful changes can equip learners with necessary skills to transition into adulthood.
Perhaps this will help ease parents’ worries. Even a little.
Cormac Duffy, Registered Manager
020 3457 0539
Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1968, 1, 91-97.
Baer, D.M., Wolf, M.M., & Risley, T.R. (1987). Some still-current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 20, 313-327
Bancroft, K., Batten, A., Lambert, S., & Madders, T. (2012) The way we are: autism in 2012.
Ospina, M. B., Seida, J. K., Clark, B., Karkhaneh, M., Hartling, L., Tjosvold, L., et al. (2008). Behavioural and developmental interventions for autism spectrum disorder: A clinical systematic review. PLoS ONE, 3, e3755.
The National Autistic Society (2016). School Report 2016