Ed Psych Report – personal account

Why might it be of interest?

Requesting a residential placement for a young person, in this case 19+ and after attending a local special school, is quite an undertaking.  A residential placement is not right for many, perhaps most, of our young people but where a family believes that it is in their young person’s best interests it can be an uphill struggle to gather the evidence needed to support the application.

Sue requested a report from a clinical psychologist from the Down’s Syndrome Association (Sophie has DS) – a service which is not currently available.  The psychologist observed Sophie at school and at home.  This was important in this case as the difference in Sophie’s behaviour and engagement between the settings was quite marked and based on observation only at school (eg by the school Ed Psych) would not lead anyone to recommend a residential placement.  Hence the need to have a more holistic approach to describe Sophie’s needs.

Sue is happy to share this report as it can be difficult for parents to get an insight into the sort of evidence they may need to present to support a residential placement.

 

Purpose of Report: To give an opinion on Sophie’s development and support needs, in the context of her reaching the stage of transition to Post19 / further education.

Report Prepared by: GW, Chartered Clinical Psychologist, Registered Practitioner Psychologist with Health & Care Professions Council

I am a Clinical psychologist with 35 years NHS experience working with adults and children with learning disabilities, 20 of those as a Consultant. I am experienced in assessment and intervention for complex emotional and behavioural difficulties.  After heading a Psychology Service for Adults for 10 years I set up and led a specialist multidisciplinary team for children with learning disabilities and mental health /emotional difficulties, (CAMHS-LD) including a diagnostic service for autism spectrum disorder in this group.

Currently, as an Associate, I provide psychology assessments and advice to families of persons with Down’s Syndrome   through the Down’s Syndrome Association. I also provide training, to parents and practitioners, on areas such as social development & behaviour and the dual diagnosis of Down’s syndrome and autism spectrum disorder.

I am a Specialist clinical psychology supervisor, accredited and registered by the British Psychological Society.

Background Information

Sophie is an 18 year old young woman with Down’s syndrome. She lives with her mother and David and attends a Specialist school for children with complex /severe learning difficulties in Richmond. She has been at this school for many years and is supported in small groups by staff who know her well. As she is now an adult, she has support through direct payments for carers to support collections from school, taking her out and/or caring for her at home for short periods.

Sophie has quite complex needs arising from her severe learning and social communication difficulties. Although it is my understanding that she may not have a formal diagnosis of autism spectrum disorder, she has been described as autistic, or as having autistic traits. She benefits from the support strategies used with people on the autistic spectrum and would appear to fit the typical  profile of someone with a dual diagnosis of Downs Syndrome and Autism Spectrum Disorder ( Ref: Warner et al, 2014 ) ; she is sociable but has some difficulties building relationships ; struggles with social communication; can become highly anxious if things do not go “right”; has major difficulties with change & transition; engages in frequent repetitive routines and self-stimulatory behaviours (flapping) and is very “compartmentalised” in her approach to life  i.e. her behaviours and even her communication style are significantly different in different settings, and with different people.

Assessment Process

Sophie was visited and observed during a full afternoon at school during break and lesson times. Her support and teaching staff were interviewed.

She was then seen at home the following day, with her parents and respite carer, LR. LR has known Sophie for many years and is a teacher at her school, though not in Sophie’s class. This visit was two hours long and included direct observation and interview with Sophie’s parents and LR.

I have also had sight of the following documents :-

1. Summary information prepared by Sophie’s mother. This outlined how Sophie’s support is organised currently, and with whom; where they are at in the assessment /transition process; options for the future; details of reports provided.
2. Document outlining the elements of a Waking Day curriculum
3. Educational Psychology Report by school Ed Psych
4. Information from School :-
   1. Educational Report for Annual review, 15.11.16
   2. Report for EHC Plan
   3. Draft EHC plan
   4. Examples of Sophie’s work – photos and notes
   5. Progress Report against key targets for learning
   6. One page profile
5. “My Amazing time at Respite” – person centred presentation outlining Sophie’s needs and achievements with her respite service.
6. Care and Support Plan, London Borough of Richmond Social Care

Findings

• Summary of Information from Reports

There is a wealth of detailed and consistent information contained in the reports that I have been able to read and it is not my intention to repeat all that information here.  However, I have attempted to extract a few key point.

Sophie’s profile of learning and behaviour is characterised by severe learning and communication difficulties. She is non-verbal and her use of alternative methods of communication – e.g. Signing, iPad, is still limited. Though some progress is being made with the iPad Sophie still does not recognise the need for, or value of using communication skills- other than body language and a few gestures- to get her needs met.

She is highly passive, self-directed and has difficulty with both initiating and stopping activity.  Having said this, she responds very well to practise and repetition, to appropriate prompts, modelling and visual supports. She also thrives on praise and social interaction on her terms but again, rarely initiates this.

Sophie needs others to be able to “read” her and then to provide her with appropriate support or intervention.

The fact that Sophie is almost certainly on the Autistic Spectrum (she is referred to as having autism in several documents) needs to be formally recognised as it underpins many of her needs.

Sophie has made good progress against her specific targets in school. This shows her capacity to continue to learn. However, she has not yet been able to take the final step to full independence on any of these goals.

In spite of her limitations, Sophie has been able to make a genuine contribution to, for example, the work of the café. She can follow a visual schedule to complete a familiar task and the activity of cooking and serving food suits her because it is practical, meets her sensory needs and has a clear visual (and edible!) outcome.  It is notable however that she does not practise any of these skills once she gets home.

Generalisation is an area of particular difficulty for Sophie. Her learning, performance of skills and behaviour is very dependent on the setting and context (place and people) and she is extremely rigid in these choices. Change takes a long time and/or may occur quite spontaneously for reasons that are not always apparent. She also has a number of repetitive behaviours (sometimes referred to as “grooves”) that she insists on carrying out, and becomes distressed if prevented or interrupted from so doing. These include flapping, tidying/rearranging objects, running & flushing water.

Sophie is very popular and people who get to know her feel that she likes to interact with them. She seems to find having a peer group to model that she can follow, particularly helpful to her development.

School

When I arrived at school Sophie was eating her lunch so while she was doing this I took the opportunity to talk to 4 teaching assistants who work regularly with Sophie. Following this I did observe Sophie briefly in the dining room and then accompanied her and the rest of her class to the cookery room where they spent the remainder of the afternoon preparing cakes which had been ordered for an event the following day.

School Staff interview

The LSAa said that Sophie is “lovely”. They explained that generally she is easy to manage but when she does have an issue it is “full on”.  It is also hard to predict when difficulties might occur. For example, on the previous day, Sophie had refused to move when it was time to go out to the regular session working in the café. Normally she loves going out on the bus and to this activity. If not happy she simply stands still and refuses to move. They had had to leave her in school. Change of face sometimes works if Sophie gets stuck but yesterday nothing would budge her. These episodes are much less frequent than previously.

Sophie needs lots of encouragement and prompting to engage; however they did not feel she needs 1-1 support. She does  rely on verbal and gestural prompts to succeed. Preparation and a visual timetable are helpful, as are well known routines.

The LSAs told me that Sophie “expects you to know what she is saying” – she does not really try to communicate her needs. They gave an example of the school assembly – Sophie was reluctant to come and sit down for it and then one day she was able to spot one of her (preferred) red chairs and bring it herself to sit on. She was then comfortable to participate. However, she had made no attempt to request the red chair using pointing, or her iPad.

The LSAs confirmed the type of activities that Sophie enjoys and also that she is sensitive to sound and will cover her ears if another child screams for example. When I asked how she conveys her own emotional state or feelings, they told me that she “looks happy”- this occurs when she is in the swimming pool for example. She also vocalises. She enjoys playful physical contact. They mentioned that she has recently developed a new behaviour of tapping the side of her head with her hand. This does not appear to be a communication of distress.

Direct Observation

In the dining hall Sophie, having finished her lunch was in the middle of the room dancing to the music which was playing. She was holding the strip of laminated paper (her flapper) – I did not observe her to put this down at any time during the next 1 ½ hours. People spoke to her as they passed but she did not acknowledge them. She clearly knew the routine when it was time to go up to the lesson and made the transition up the stairs to the classroom willingly, along with her class mates and staff.

In the cookery room she worked at her own station with LSA support and the use of a visual guide with the recipe, quantities and method. She slowly, deliberately and patiently carried out each step of the process in turn. She received occasional verbal prompts and encouragement from the LSA. There were 5 or 6 students including Sophie and 3 support staff for most of the session. The atmosphere in the room was calm and focussed and I had the impression that this was a well-structured and practised routine where everyone knew what was expected of them and their roles.  Sophie had her iPad available but was not motivated to use it unless specifically prompted to do so, which she did at the end of the session and when the headteacher popped into the lesson. She made vocal sounds as she worked, also used low key gestures – a wave of her hand – this may have multiple meanings?

Sophie’s sensory needs were apparent. The task involved lots of movement – fetching, carrying, pouring, mixing etc. However, Sophie still engaged with her flapper and also some rocking and stepping side to side. When grating the carrots -a task which took some time and effort – she would grate for a while then stop and rock, then grate for a while, and so on. She showed considerable persistence and also no visible sign of frustration if she made a mistake e.g. fetching four eggs instead of two, flour instead of sugar ( there was no sugar in the usual place…she made no attempt to communicate this to anyone). If she needed to use both hands for something—using the mixer, or loading the washing machine, she dextrously tucked her flapper under one arm. I also observed her to stop periodically during a task, becoming very still for a minute or so before resuming the task.

The general atmosphere in the lesson was very calm with little noise other than staff speaking and the sounds associated with making cakes. All the students were non-verbal though one young man was very adept at using his iPad. Sophie seemed very comfortable.

Towards the end of the lesson, Sophie was asked to wash some dishes – staff had told me that she does not like to do this and was likely to refuse. However, she happily complied with the request and proceeded to wash a sinkful of pots. We reflected afterwards that this may have been because, unlike on previous occasions, the LSA had left the tap running…Sophie’s love of running water being enough to motivate her to complete the task and overcome any resistance.

Home

Parental /Carer interview

The following excerpt is quoted directly from written information provided to me by Sophie’s mother. I am quoting it verbatim because, in my opinion, it provides a very clear and detailed picture of Sophie’s functioning in her home setting, and of Sophie’s issues with transition, travel and change.

• Sophie has her routine when she comes home – she needs to complete this before she will do anything else
  • She empties my handbag and any other bags I have
  • If we’ve been shopping she will help empty the shopping bags
  • She moves things around to where she wants them to be
  • She removes some items from her school bag
• Once she has finished she will go to her room or to the bathroom
• She may take her iPad into her room to watch clips on YouTube
• She potters around the house all evening
  • Getting a drink
  • Waiting for me to finish my cup of tea so she can take the cup (if I leave it she will take it and tip the contents down the sink)
  • Moving things to where she wants them – some plates go under the sofa
  • In and out of the bathroom, flushing the loo frequently
  • Taking a bath
• She may look at us if we speak to her but she doesn’t engage
• She doesn’t take part in any of our domestic activities
  • For example, she won’t help or even watch while we cook
  • She doesn’t watch TV with us
  • Tidying up is only on her terms – she only moves things around that bother her
• She spends a lot of time in the bathroom
  • She may take a bath
  • She sits on the loo flushing it frequently
• She carries on like this with anyone who is in the house – including her befrienders

Two years ago Sophie spent all of her time at home in the bathroom until she went to bed.  This lasted for about 3 months – gradually she was happy to leave the door open, then she started to come out of the bathroom for a few minutes a few times in the evening.  Now she mostly stays in her room or the bathroom.  She really only spends time in the living room or kitchen when she is eating or waiting for us to finish eating / drinking so she can move our plates and cups. 

Transitions from home to school and home again have not been smooth and easily managed over the last few years.  While we have a workable arrangement it has been far from ideal and even now these transitions have their issues. 

• Now Sophie has befrienders to pick her up 3 days a week but she regularly makes one of her befrienders wait 20-30 minutes before she will leave school with her and she does this from time to time with the other befrienders
• Even now, if one her befrienders can’t pick her up I have to do the pick up
• We had an issue for nearly 3 months this winter in the morning when Sophie wouldn’t leave her room until a street light had gone off – we had to rearrange the bus schedule – affecting several other families – because Sophie wasn’t ready for the bus at her allocated time
• Sophie doesn’t get up and get herself ready for school in the morning.  I have to freshen her up and dress her while she lies in bed.  If I didn’t do that she would not be ready for the bus
• She doesn’t attend any health appointments because she won’t get out of the car to go into the hospital, dentist or doctor’s surgery – luckily she is very healthy
• While Sophie enjoys travelling it is difficult over longer distances, such as when we go on holiday:
  • We have had to sleep in the car overnight on 2 occasions because Sophie wouldn’t come into the hotel when we stopped to break our journey
  • We had to travel in the hold of a car ferry one year as she wouldn’t get out of the car and last year she only got out because we forced her to
  • I have to take other people with me for long journeys so we can take breaks

Stop, start, waiting – all of these things potentially lead to difficulties with transitions although Sophie is managing better at school when things don’t go to plan.  At home we make sure we are pretty much ready to go out before we get Sophie dressed as once she is dressed she is ready to go and any delay can lead to her then refusing to go.

Sophie loves being with her friends and when we meet up with them she has such a good time and is obviously very happy in their company.  However, this isn’t enough to be able to get her to go to things they go to – each other’s houses, a variety of clubs and activities

Sophie won’t go into other houses.  She doesn’t really like new places so some reluctance at a new house would be expected but it goes way beyond that.  It’s not just that she won’t go into a new house (her sister’s flat, for example) but that she has stopped going to houses she is familiar with and used to go into (my brother’s house, the houses of friends).

Sophie is very different in different settings.  At school (and at respite) she gets involved, manages transitions (mostly), tries new things, keeps going.  At home it’s just the opposite.  If you only see Sophie in one setting you only have half the picture. 

Transitions are definitely a sticking point for Sophie.  That’s not to say that she doesn’t manage many very well – school, for instance, experience far fewer ‘stuck’ moments than they have over the years – but there’s no doubt that new routines and transitions have to be planned and introduced carefully.

Additionally to the above, the following information was shared by Sophie’s parents and her befriender, LR:-

Sophie has grown in maturity and confidence and copes somewhat better with change than previously. Transfer of skills remains a major issue. For example, it took several years after Sophie was toilet trained at school before she transferred this skill to home. The fact that Sophie refuses to leave the house once she has come in from school is a big source of frustration and means that she is missing out on opportunities to socialise and be more independent. Without the flow and structure of school, and the modelling of peers, Sophie becomes immersed in a series of repetitive and self-soothing actions, or “grooves”.

“A simple definition of a groove is a set pattern or routine in ones’ actions or thoughts ……People with Down Syndrome are particularly good at this business of having and following grooves in their daily lives……groove activities may offer a refuge from the stresses and strains of daily life……these often involve repeating an enjoyable activity in a quiet or private space , sometimes as part of the daily routine………Ordering grooves are also very important to many people with Down Syndrome…involve being neat and tidy with one’s, room furniture, clothing and other personal items….If taken to an extreme , these grooves can be difficult for families to live with..Finally, and most importantly , the groove is a powerful means of expression and communication. This is especially true of people with DS who have a limited ability to express themselves verbally……Many types of sensory issues may result in stuck grooves….may also point to some kind of environmental stress , grooves originally used to relax can become used to avoid something….”  McGuire , D. & Chicoine, B., (2006)

Parents find that they have to choose carefully the issues where they have to insist on Sophie doing something different and so, for the most part, they go along with her routines and rituals. For instance, now Sophie will not go to bed until her parents both retire.

They do keep trying new things e.g. to get her out in the evening. LR says it is always worth trying as Sophie can surprise you. However, compliance cannot be predicted and Sophie has an enormous capacity for waiting things out.  LR makes sure that she builds variety into the things they do together so that she does not set up new (unbreakable) routines.

Sophie’s family are important to her and she is especially fond of her sister and her niece. However, she compartmentalises with family members too, and will only go to certain places /do certain things with certain people.  This is likely to be in part because she has spent more time with these people, giving more opportunity for habits and patterns to build up. However too much novelty would be disastrous for Sophie – she needs familiarity to feel safe and comfortable enough to function. She does not express discomfort or distress by acting out, simply by becoming still…her mother and LR described her as shedding “silent tears”.

The experience she had with the Children’s respite service illustrates well the type of challenges that are likely to be experienced when introducing Sophie to a new setting or experience but also the great things that can be achieved given enough time, patience, staged and scaffolded support. She will need time to get used to things and to watch what is going on before she can be expected to participate. This how Sophie comes to understand the world, and be able to engage with it.

Sophie never indicates that she is too hot, or cold, or in pain. She will help herself to a drink of water and to some food. However, she is generally and overwhelmingly passive.

Direct Observation

When Sophie came in with LR she did not greet anyone but started to go through the ritual described by her mother. (emptying handbag/arranging cosmetics) She was happy to do this while we chatted. She took her lunch box into the kitchen where she stood at the table, leaning over a chair in a particular position. This was because this is how she eats at home and she had decided to eat the sandwich that she had not had at lunch time.

She tidied away our teacups and then, because she wished to move a small table into the “correct” position, and my bag was in the way, she came and stood quietly in front of me until I realised what it was she needed me to do i.e. move my bag. She made no attempt to communicate with me or indicate what she wanted. She then placed the table to her satisfaction and carried on with her grooves.

By the time I was ready to leave the house, Sophie had installed herself in the bathroom, sitting on the toilet. She apparently has no sense of personal modesty or privacy.

Formulation 

• Sophie has a pleasant personality and is popular with family and staff who know her. She is very passive and takes a long time to get used to new things, places and people.  She has Downs Syndrome and some of the physical issues associated with that—underactive thyroid; low muscle tone. In addition she has complex needs with significant autistic features.
• Sophie has a severe level of learning disability and social communication impairment. She is only just beginning to experience functional communication with others but generally still expects others to understand and meet her needs without her communicating them.
• She has particular sensory needs – evidenced by her frequent engagement in sensory seeking behaviours which may also serve to reduce levels of anxiety associated with autism.
• In common with many people with her developmental profile, Sophie shows difficulties with executive functioning ….. these affect initiation, ability to shift set, generalisation and flexibility. She has extreme tendencies to grooves and rigid behaviours and “compartmentalises” settings and people, associating specific behaviours and communication patterns to these compartments.
• She may use getting stuck as form of avoidance and/or to reduce stress- and  she has a  considerable capacity for waiting.
• She is still learning, maturing and very much benefiting from appropriate learning experiences.
• Sophie needs to see to understand (more than once) and she needs to keep moving.
• She has become extremely rigid within her home setting leading to significant challenges for parents and carers in supporting her and maintaining a quality of family life.

Summary & Recommendations for Future Support

• In my opinion, the following will be important in supporting Sophie in her transition to adulthood and ensuring that she can develop the skills needed to access and participate in local supported living services in due course.
• She  needs  to move out of home environment in order  to develop healthy routines and patterns of behaviour whilst maintaining  regular contact with family and friends
• She will benefit from an autism- friendly environment and strategies as well as access to ongoing advice, support and training around people who have Downs syndrome & autism for staff working with Sophie.
• Availability of peer modelling and support will be helpful and it will be most important to minimise the number of transitions during the day, particularly in the early months after leaving school , which has been Sophie’s secure base for so long.
• Sophie’s programme needs to provide a  balance between novelty & familiarity.
• A waking day curriculum is strongly recommended.  Continuity, consistency and communication between educational and care provision will be essential to avoid the risk of breakdown of support arrangements if too much change and /or services cannot be flexible enough.
• The benefits to Sophie in terms of engagement, development of skills and management of behaviour need to be regularly reviewed in any new setting.
• Sophie does not show acting out -type challenging behaviour and as such her needs may be more hidden or difficult to determine. However in my opinion this does not mean she does not require a specialist service.
• Going forward the following goals are particularly  recommended:
  • Continuing work on encouraging and developing Sophie’s functional communication skills, using her iPad, or any other methods that Sophie  engages with.
  • Work on desensitisation to attending medical appointments etc. (once settled)
  • Carefully planned approaches to helping Sophie tackle new things and move out of her “comfort zone”, whilst improving everyone’s  understanding of the conditions which help Sophie to feel most settled and comfortable , reducing the need for her to engage in her avoidance/stress management  strategies.

GW B.Sc., M.A., Dip Psych., C. Psychol., AF.B. Ps. S

Chartered Clinical Psychologist

Registered Practitioner Psychologist with Health & Care Professions Council

References:-

Warner G., Moss J., Smith P., Howlin P. ( 2014)  “Autism Characteristics and Behavioural Disturbances in ∼ 500 Children with Down’s Syndrome in England and Wales..” Autism Research, Vol 7, Issue 4, 433-441

Dennis McGuire and Brian Chicoine. “Mental wellness in adults with Down syndrome: a guide to emotional and behavioural strengths and challenges.” Woodbine House 2006.