Colour:

A | A | A

The Son-Rise Program

This information sheet has been written to provide information to parents and carers, not as a recommendation. The outcome of any approach will depend on the needs of the individual, which vary greatly, and the appropriate application of the intervention. An intervention that may help one individual may not be effective for another. It would therefore not be appropriate for The National Autistic Society (NAS) to recommend any one particular practice or therapy. The American spelling 'program' has been used throughout for consistency.

1. How the program began

It is said by the Option Institute that after Raun Kaufman was diagnosed with autism at 18 months, professionals suggested to his parents that he be institutionalised. They say that after looking for programs to help their son and finding nothing they felt was suitable, the Kaufmans instead decided to develop their own home-based program. They worked with him seven days a week, 12 hours a day and after three years, it is reported that he was able to attend a mainstream school (Kaufman, B. 1981). After writing the book 'Son Rise' and the showing of the subsequent film, the family was inundated with requests for help. As a result, they set up the Option Institute in Sheffield, Massachusetts, USA, and launched the Son-Rise Program in 1983 (Kaufman, S. 1998). Raun Kaufman now works with parents and children on the program.

2. The theory of the program

There are five underlying principles that the Institute teaches and believe in as part of its program. These are:

The importance of a loving and accepting attitude

The Institute believes that the attitudes of love and acceptance are what all interactions and programs are built on. This is particularly important with regard to the child, who is often viewed negatively. It claims that as a result, parents learn to accept both themselves and their child first, including all their behaviours and 'isms' - (the description given to a child's repetitive behaviour, positively) (Kaufman, S. 1998). It believes that adults who are accepting, sincere, enthusiastic and exciting are appealing to the child and as result will encourage interactions (Horler et al. 1998) and that the child works better and is more interactive if the adult is completely comfortable (Kaufman, R. 2002).

The gift of a special child

This is closely linked to the first attitude. Parents are taught to see their child as a gift, to whom parents can respond with 'energy and dedication' (Kaufman, S. 1998).

The parents are the child's best resource

Parents are seen by the Institute as the people who understand their child the best. The Institute feels that other programs and professionals often ignore this fundamental point.

The question of hope and false hope

The claim made by the Institute that 'autism doesn't have to be a life sentence' is seen by some as misleading in its claim of recovery from autism. Conversely, the Institute also states that doing the Son-Rise Program is no longer a guarantee of results. However, they believe that this should not stop you from trying (Kaufman, S. 1998).

The child as teacher

Rather than teaching a preset standard of skills, the Program is run by the child, at a pace set by the child. He or she can then explore and develop in his/her own time. This entails others joining the child in his/her world by mimicking his/her 'isms' - the activities he/she often repeats. The aim of the activity is not simply to copy the child's actions but to gain his/her trust. As trust is gained the child will lead the adult into his/her world. Accordingly, it is then believed that it is possible to use the child's motivation as a teaching tool simplifying every activity and event, breaking them down into digestible parts. Interaction can then become a pleasurable activity and make people more attractive to the child than the objects and obsessions (MacDonald and MacDonald 1991).

The Institute believes that joining the child in his/her 'isms' also indicates acceptance of the child's behaviour and gives 'social meaning' to the task so that retreating into the 'ism' will no longer block out the world (Jordan and Powell 1993). Although the Son-Rise Program has never carried out any formal assessments, Dawson and Adams (1994) found that children with autism were more socially responsive and showed more eye contact when the experimenter imitates their behaviour (Dawson and Adams in Escalona et. al. 2002).

Alongside these principles are a number of other approaches taught by the Program. It teaches that parents need to become a 'happy detective', observing the child first to watch for clues and cues to help them learn the child's behaviour and routines. It also teaches they need to learn to take into account sensitivities to things such as sound (Kaufman, B. 1981) and to try out different pitches and levels of noise to see which the child is more responsive to. Another recommendation is to limit language so the child knows what to focus on for example, instead of saying, 'Do you want some dinner?' say, 'Dinner?'

Eye contact is also particularly emphasised in the Program. The Institute believes that the more a child looks, the more he/she learns. As a result eye contact is encouraged at every opportunity, ie mimicking the 'ism' at eye level, feeding food at eye level, raising objects to eye level. Often the Program will introduce eye contact through the use of a mirror, as some children can at first find it uncomfortable to give direct eye contact.

Dietary intervention is also focused upon. The Institute strongly recommends looking into a gluten-and casein-free diet, eliminating caffeine, reducing sugar intake, and looking at exploring the possibility of Candida yeast overgrowth (Kaufman, R. 2004). Investigation of any other intolerance the child may have is also recommended (for further information download the diet and vitamins factsheet at the bottom of this page).

3. The playroom

A calm, safe and a distraction-free playroom is one of the key elements of the Son-Rise Program. The Institute highlights this as the place where it believes children will find it easiest to process information and relate to the people around them. The idea developed from the fact that the Kaufmans found their bathroom to be the best environment to work with their son as it was the most calm and distraction-free environment in the house. Sensory processing is often an area that people with autism spectrum disorders find difficult, often finding it difficult to concentrate whilst competing with background noises, visual stimuli etc (for more information please refer to our sensory information sheet at the bottom of this page). Parents are strongly encouraged to create such a playroom at home.

The Institute has a number of recommendations to make the playroom as 'distraction-free' as possible. These include putting filters on the window to prevent the outside world from becoming distracting as well as making the room as sound-proof as possible. The playroom walls should be a fairly neutral colour, with few displays on them with equipment kept high out of reach on shelves. It recommends vinyl flooring without a pattern as it is durable, easily cleaned and not distracting for the child. Many children are hypersensitive to light so lights that do not flicker are recommended, with a particular note not to use fluorescent lighting. The Institute also recommends removing any electronic equipment such as televisions and videos as this is a passive form of entertainment and also often hypnotic and absorbing for children (Kaufman 2004).

Wooden shelves should be built high up (about 4ft off the floor), high up enough so the child cannot reach and food and toys are kept on these. As a result the room is not only distraction-free but also requires the child to learn to request toys and food.

Most playrooms also have an observation window so that volunteers and parents can observe sessions as part of ongoing training as well as having an intercom system. A baby monitoring device is a relatively inexpensive solution.

Other objects suggested for the room are exercise balls, a wooden slide with detachable steps, a low wooden table, a bench and a small trampoline. The idea is to use any large items to help the child use their body but without so many objects as to form a distraction. There is currently information on the Son-Rise website with suggestions as to which products they have found the most useful to have in the playroom as well as details of suppliers. Further information can be found at: www.autismtreatmentcenter.org/cgi-local//ikonboard/announcements.cgi.

Another key aspect of the room is that there is only one other person in the room with the child at a time. As a result the whole playroom is centred on the child and the environment is very predictable. The Options Institute believes that one of the reasons that children with autism retreat into their 'isms' is because they, unlike the outside world, are predictable and therefore comforting. By making the environment similarly predictable, the child is less likely to retreat into their 'isms' and learns to trust their environment (Horler et. al. 1998). The volunteer is encouraged 'to go in with a bang' showing the child how exciting life can be (Macey 1994). 'Excitement, enthusiasm and energy are the order of the day in the Option playroom' (Macey 1994). It is a room where the word 'no' does not exist, the idea being that the child has full control and the ability to control the room.

4. Who is the program aimed at?

Although the Program is mostly marketed towards people with autism, the Kaufmans see the Son-Rise Program as being a global program for people with a variety of difficulties including autism, PDD and Down syndrome at a variety of ages (Kaufman, R. 2002). Early intervention is emphasised, recommending that the approach is used from the earliest possible age. However, they also claim that older children can carry out the Program and make significant progress (Kaufman, R. 2002).

5. The different Son-Rise programs offered by the Institute

The Start-Up Program

This is an introductory five-day program designed to give people the tools to design and implement their own home program. The Institute's website recommends the program to parents who are already running a home program they are not happy with, who are contemplating running either a full- or part-time program, family members and volunteers interested in supporting a family, or professionals who are working with children with special needs. A number of teachers use a wide range of program topics including speech and language development, handling behaviour and leading a program amongst many others. This is all done through slides, videos, lectures, activities and question and answer sessions. Creating a playroom and recruiting and training volunteers is also covered as well as providing attitudinal training. At the end, everyone is given a manual to refer to at home. This program is run a number of times a year in both the USA and the UK.

The Intensive Program

This program is the most individual and intensive program offered and is only held at the Options Institute in Massachusetts, USA. Parents and their children live and work in the Son-Rise house for a week. The house includes a playroom with a two-way mirror so the child can be observed at all times. An individual program is designed. Thc child is kept locked in a playroom from 08.30 - 17.30 with lunch being left at the door for a volunteer to collect. The child, as a result, interacts with only one other person during this time. Parents also work the same hours, either with the child or in one-to-one dialogue. One-to-one dialogue is one of the key teaching tools at the Institute. Parents have one-to-one sessions with members of staff, a questioning process to find out parental areas of stress to help maintain an attitude of acceptance and enthusiasm with the child.

As a result, at the end of the program, the child will have received 35 hours of intensive interaction and parents will have received 45 hours. Before going on the program parents talk to a member of staff to provide personal history, and to share concerns and what they would like to get out of the program. Teaching is done in a number of ways including observing staff with your child to learn the skills, hands on practical working with the child and confidence-building to manage a program at home. A video of you working with your child is also produced for yourself and for training for others. A team meeting of all staff and parents is also held to create clear baselines and directions to establish the child's motivations and also to use data, observations, techniques and experience.

The Maximum Impact Program

This is a more advanced version of Start-Up for parents who have done Start-Up and perhaps the Intensive Course as well. It is a similar course to Start-Up in teaching style and includes presentations by Barry Neil and Samahria Lyte Kaufman. Individualised sessions with them can also be scheduled. They also focus more on question and answers than the other program. Again, this program is also run a couple of times a year in both the USA and the UK.

After parents have been trained, they then can get further support either by telephone or they can send a video to get feedback (Kaufman, S. 1998). It is also possible for families to have a free 25-minute consultation with a family counsellor before going on a program (see www.son-rise.org/
consultations.html for further details).

New Frontiers: The Son-Rise Advanced Training Program

This is a new program recently launched by the Options Institute. It is offered to parents who have completed at least one of the other programs: Start-Up, Maximum Impact or the Intensive Program. This program is set to a curriculum. It is to assess a child's social development and how to develop these skills further. Goals include developing eye contact, communication, physical interaction and friendship skills. This program will be offered in the United Kingdom from autumn 2006.

In-Home Outreach Service

This is a service for parents who have attended one of the above programs and are now running a Son-Rise Program at home. One of their certified teachers will come to the home and work with your family and any volunteers or professionals that are working with your child. This service is available in the UK. Further information can be found on the Options Institute's website at: www.autismtreatmentcenter.org/contents/programs_and_services/
continuing_support_services.php or by calling 001-413-229-2100.

Costs

It is very difficult to find out the costs of the different programs as it is not something readily advertised on their website. However, the estimates of the courses are as follow:

$1,995 for the Start-Up Program in the USA
$2,385 for the Start-Up Program in the UK
$11,500 for the Intensive Program
$1,995 for the Maximum Impact Program in the USA
$2,385 for the Maximum Impact Program in the UK
Phone consultation $550 (50 minutes) though this can vary greatly depending on the professional you talk to.

The Institute can also provide information and possibly help to families in regards to financial assistance and fundraising (Kaufman, S. 1998). There is information on specific UK funding at: www.autismtreatmentcenter.org/
contents/other_sections/uk_funding_available.php. The Options Institute has also written a fundraising pack which has suggestions of how to raise funds locally. You can download the pack from their website at: www.autismtreatmentcenter.org/contents/files/frguide.pdf.

It is worth bearing in mind that you will need ongoing financial assistance to maintain the program.

6. Volunteers

Running and maintaining such an intensive program does rely on having a team of dedicated and reliable volunteers to help maintain it. In the UK, there is no organisation from which volunteers can be recruited and those working with children may need to be vetted for child protection purposes. The Institute produces guidelines and tips on recruiting volunteers including providing examples of posters and fliers to advertise for volunteers as well as covering letters, interview techniques and possibly training. It recommends recruiting from a large number of places such as colleges, sports centres, churches and social clubs as well as asking friends, colleagues and acquaintances. It also suggests writing an interest story for the local paper.

Many parents advertise in the psychology and nursing department of their local universities as students are often looking for experience in the field of special needs. It is also possible to advertise in the British Psychological Society memorandum, a job vacancies booklet that goes out to psychology students and graduates. It may also be possible to advertise on the SNAP website, an agency for nannies working with children with special needs, though this would be for paid placements. (For details on these, see useful contacts section.) There is also a section on the Son-Rise Program where parents can advertise for volunteers and in turn volunteers can advertise for placements (www.son-rise.org/cgi-local/ikonboard/forums.cgi?forum=21).

It is important that volunteers are made aware of the amount of hours and the length of time they are required to commit to the Program. The Program recommends asking for at least four to eight hours a week as well as attending bi-weekly team meeting with all other volunteers. They should be expected to keep a formal journal of behaviour, changes etc so that these changes can be discussed at the team meetings and used to decide what the goals should be for forthcoming sessions.

7. Pros and cons of the Program

Pros

One of the biggest advantages reported by parents doing the Program is the amount of productive and positive time they can spend with their child (Jordan and Powell 1993). Williams (2004) carried out a survey on parents doing the Program, and many noted that the family generally felt more positive and interaction amongst the whole family had improved since doing the Program (Williams 2004). The Program shares a number of features with other autism-specific programs, particularly the environmental and sensory impact and the need to develop empathy for the way the child sees the world. However, possibly the most striking feature of the Program, is the huge amount of one-to-one intervention the child can receive on a daily basis. There is research to support that such huge levels of intensive interaction can encourage development in the child, though this is not specifically in regards to Son-Rise (Jordan and Powell 1993).

Cons

Apart from the costs of the Program, a major criticism of Son-Rise is that the Options Institute has never allowed or carried out any formal research on the effectiveness of it. It argues that it does not have the resources to carry out any large scale evaluation of the success rate (Kaufman, R. 2002), but it is said to have also turned down external researchers' requests as well. Jordan (1993) points out that the informal, successful reports there have been of the Program have been with young children and there are no reports on older children (Jordan 1993). It is possible that the Program works better for some children than others, with Jordan suggesting that it may depend on a 'certain level of intellectual potential' (Jordan 1993 and Williams and Wishart 1999).

Another difficulty that parents commonly face is recruiting and retaining enough volunteers for the Program. This can be unreliable, especially around holidays when many students go home, resulting in the parents having to cover many hours of the Program themselves (Macey 1994). Williams (2004) found in her survey that the most common obstacle was the lack of, or high turnover of, volunteers. Parents worked for an average of 11 hours a week out of a possible 19 and as a result other problems arise such as not spending enough time with the rest of the family. Howlin (1997) emphasises that any benefits to a child from an intensive program must be weighed against the disruption to family life and relationships (Williams and Wishart 1999). In the UK there may also be difficulties associated with vetting procedures for those working with children.

The emphasis on gaining eye contact is also questioned by some professionals. For some people on the autism spectrum, eye contact can be distressing and uncomfortable. Luke Jackson, a teenager with Asperger syndrome, describes giving someone eye contact as feeling 'as if their eyes are burning me' (Jackson 2002 p70). He also finds it difficult to listen to someone at the same time as looking at them (Jackson 2002). This again emphasises, how the intervention may be more effective for some children than others.

8. Alternatives to the Son-Rise Program

There are now a number of interventions designed for people on the autism spectrum. Son-Rise sees the program in direct contrast to other programs such as Lovaas (for further information please refer to our Lovaas factsheet). Whilst both are home-based, intensive and one-to-one, there are a number of differences (Lynch 1996). Whilst the Son-Rise Program is child-led, Lovaas is therapist-led; Son-Rise is a more flexible program, whereas Lovaas is more structured (Lynch 1996).

The Growing Minds Institute also provides an alternative to the Son-Rise Program. It is a program directed and taught by Steven Wertz who has been both a Son-Rise and ABA teacher in the past. This Institute provides individual education plans based on a number of different teaching methods including Son-Rise, Lovaas, TEACCH (for further information please download our TEACCH information sheet at the bottom of this page), floor time etc to develop your own teaching style for the child. Steven Wertz is certified in ABA and Son-Rise.

It is reported that some parents have found that the Son-Rise Program has given them a good launch pad for other programs. One set of parents found that it was good at getting their child to establish rapport and confidence with a large number of people and increasing listening and understanding skills. However, it did not allow the child to fulfil his potential academically but gave the child good skills for other programs (Horler et. al. 1998).

As all these programs require such a large amount of commitment from the family, it is always useful to do as much research on them as possible. The Autism99 Information Therapy Checklist provides tips on different things you should consider when researching any type of therapy (http://trainland.tripod.com/informcenter.htm). Alternatively, a more concise checklist can be found at: www.awares.org/static_docs/ways_of_helping.
asp?docSection=2. Ramanczyk and Gills (2005) have also developed a similar checklist (Ramanczyk and Gills in Zager 2005) (see recommended reading section for further details).

9. Support

Unfortunately, there are no organised support groups for parents doing the Son-Rise Program in the UK. However, it may be useful to contact your local support group to see if there are other parents who are carrying out similar programs. Details of your nearest group can be found at: www.autism.org.uk/nas/jsp/polopoly.jsp?d=113&a=2680 for international contacts or by calling the Autism Helpline for UK contacts.

There are also a number of support groups on the internet. There is a message board on the Son-Rise website for families in the UK (www.son-rise.org/cgi-local/ikonboard/forums.cgi?forum=14). The message board also has details of people who want to volunteer as well as people looking for volunteers. There are also Son-Rise support groups on a number of group chat forums. Go to www.groups.yahoo.com or www.groups-beta.google.com and type in 'son rise' into the search engine for 'groups'. It is also possible to post questions online to Raun Kaufman at: www.autismtoday.com/experts.

Useful contacts

The Son-Rise Program at the Option Institute
2080 Undermountain Road
Sheffield, MA 01257 ¡V 9643
USA
Tel: 413 229 2100
Fax: 413 229 3202
Email: sonrise@option.org
Website: www.son-rise.org

Growing Minds: Autism Programs
15096 115th Avenue North
Jupiter
Florida 33478
Phone: 561 ¡V 748 ¡V 9697
Fax: 561 ¡V 748 ¡V 6548
Email: steven@autism-programs.com
Website: www.autism-programs.com/index.htm

Snap Childcare
91-93 Great Eastern Street.
Shoreditch
London
EC2A 3HZ
Tel: 020 7729 2200 (Monday - Friday 8.30 - 6.00pm)
Fax: 020 7729 0022
Email: info@snapchildcare.co.uk

British Psychological Society Appointments Memorandum
BPS Communication Ltd.
St Andrews House
48 Princess Road East
Leicester
LE1 7DR
Tel: 0116 254 9568
Fax: 0116 247 0787
Email: enquiry@appmemo.co.uk
Contact details to advertise in their job vacancies publications.

The Caudwell Charitable Trust
Caudwell Charitable Trust
Minton Hollins
Shelton Old Road
Stoke on Trent
ST4 7RY
Tel: 0845 300 1348
Email: charitabletrust@caudwell.com
A charity that has provided grants to UK families to do one of the programs.