Views of autistic adults on assessment in the early years

Transcription

1 Views of autistic adults on what should be assessed and how assessment should be conducted on children with autism in the early years Summary of autistic adults views on assessment 1. Avoid drawing negative conclusions when viewing children through a neurotypical lens or checking against typical milestones as autistic development is often very different and strengths may be missed 2. Avoid giving children the message (in what is done and written) that they are deficient as this can seriously affect self-esteem 3. Do not assume instructions are clear and have the same meaning for an autistic child 4. Assess in a variety of settings particularly ones where the child feels comfortable. Clinic may be the least good setting. Observation of the child was mentioned by all as important. 5. The context in which the child is seen/assessed has a major effect on performance and behaviour 6. Get multiple perspectives from all those who know the child 7. Know as much about the person in advance of the assessment 8. Areas to assess mentioned by most included special interests and motivators, and sensory issues, and social interaction to a less extent. Some stressed the importance of trying to understand the how and why the child explores materials and the rationale for repetitive actions or special interests. Several other areas were identified for assessment, which were important to the respondents, as individuals. 9. Engage and involve parents, particularly on what not to do in assessment sessions - but realise that they have a particular view when supplying data on their child. What an adult says about Ben says more about the adult than it does about Ben. ). 10. BEFORE assessment, there is a need to know stress triggers, motivators and interests and how autism affects individuals (and not just in terms of deficits). 11. Repeat assessment at regular intervals as there can be dramatic changes

2 A Views on the areas of skill and development it is useful for staff to measure in young children with autism Sensory and social perceptions, as these affect motivation which can be used to enable us to develop. IF professionals had assessed these in my case, then they would have found that: I found much social interaction with peers painful and confusing, but that I loved solitary activities and was particularly switched on to colours and patterns. This would have enabled relevant professionals (e.g. in school) to use this information in creating a physical and social environment that motivated me to engage when I was at school many of the motivational techniques were social (extra playtime for successful completion of learning tasks, chance to sit next to best friend etc) Had my social and sensory skills been measured it may have been possible to use other motivational factors for me to increase my incentive to engage and learn. (e.g. If you complete this learning task you can sort the books you can tidy the painting area you can play in the water etc.) Social skills One adult commented: I see skills and abilities as socially situated and somewhat dependent on context. (eg it would be almost impossible to measure engagement (with adults or peers), as this changes depending on so many other factors than those solely located in the child. In many ways, one would need to look at interactions with a number of people and in a number of settings Growth and depth of knowledge/focus in their special interests Strength of character/ resilience Emotional awareness and therefore also measuring the most effective ways of teaching it Academic ability- are there certain subjects that people with autism are more likely to excel in and vice versa? Sense of danger- perhaps measure how a sense of danger can be taught to a child with autism and how effectively Higher pain threshold? How transferable is the child s skillset? And what is the most effective way of helping the child to use their skillset in more than one setting/room/topic? How do they develop self-coping strategies for anxiety/sensory issues etc Memory skills Imagination- is it restricted to certain areas or are they able to transfer this skill? Sleeping patterns Verbal/linguistic ability Sensory sensitivity would be difficult to measure - but one should record likely triggers and so on. One could measure problem-solving skills in a number of ways (if those being tested understand the test requirements in the first place) - things like non-verbal IQ tests could be useful (i.e. tests that will also show up potential strengths and interests/motivations).

3 If one tests for focus/distraction - this can be very difficult - as this will depend on the level of interest in the stimuli provided. Some way of recording/ measuring interests and motivations would be useful - if seen that is, as intrinsic to developmental/educational progress and not as rewards for appropriate behaviour. Learning style Function of repetitive behaviours (stimming) (eg is it to communicate stress or sensory overload). Anxiety and stress Generalisation ability Understanding social contexts Pointing and following an object visually Amount of interest shown in other people Amount of direct game contact with other people/friends in a play area Amount of pretend games the child is engaged with Amount of adaption, when a routine or a change in the environment (i.e. move furniture in a room) occurs. The extent to which statements are taken literally. The amount of time in which the child spends on a hobby/games The amount of reaction to unusual sensory perception (i.e. smells, textures, sounds) B Views on the best way to assess skills (eg observation, asking parents, testing the child, asking the child questions) Engage with the child directly as much as possible. (I had strong verbal abilities) because It is very easy for parents and professionals to get the wrong end of the stick about a child s abilities or perceptions. I believe that some of my mimicking skills and rote-learned behaviour enabled me to appear more able, especially in terms of social communication than I actually was. Also, asking me questions could have alerted a professional to some of the specific sensory experiences of which I was aware as a young child, but which may not have been apparent to parents or professionals with whom I had regular contact. Detailed observation may also be very useful if professionals were to have observed my attempts at social interaction they would have picked up my problems. With non-verbal children systematic and rigorous observation. Engaging with parents is important, particularly on what NOT to do (e.g. they will likely have a good idea of general triggers to stress).

4 Testing children has to be done with care, so as not to trigger stress, but also in terms of design (including asking questions). Many instructions and questions will not be understood at all (for the less verbal), or will be perceived quite differently. Talking to the child s peers on what they notice and what do they do to Observing the child, watching how they interact with everything. Asking questions to the child is also helpful, but this will be individual. Some may respond easily to questions others may not cope at all - this may be due to their sensory processing issues and the environment they are in. The busier the environment is (on all senses) the less chance you will be able to engage with the child. Observe HOW what the child does. For example, if a child spends a lot of time lining up cars, make note of any patterns in the child s method. There may be connections between shapes, colours or size. Some may have more complex patterns - they may go by dates (according to car history/invention) or make of car. There is always a pattern to what an autistic child does which tells you what and how they are processing/understanding the world by. Then create tests based on the observed patterns. So if you see a pattern of cars being lined up by colour, add some different toys (not cars) of the same colour/s in front of the child and observe the response. This could be done with shapes as well. I would also put in random shapes, colours, sizes etc and observe the response. Once there is some understanding of how the child is processing information methods can be devised to help the child build new information about the world and life skills via this same conduit. Professionals must understand that lining things up is not all about order. A mix between observation at home and at school, and testing the child directly. A mix is important as a child may blossom in one environment, but fail in another due to the environment setup, such as lighting, smells, sounds etc. From my own personal experience, asking questions is a waste of time, as it would be highly likely I would have no idea of what you are really asking, so I would leave and not answer the question. C Views on where the assessments should take place (eg home, school, clinic, other) Adult 1: A variety of settings is very important A professional observing me at home would have thought me much more verbally proficient and socially aware than someone observing me in a less familiar environment (infant school, Rainbow- Guides etc). Observing in an environment where the child has some control (e.g. their bedroom where they can arrange their possessions) may give an indication of tolerances and preferences. The child will often present very differently in a clinic to how they would in settings they know well. So observe the child in their own environment. A child s skills and difficulties may show themselves in entirely different ways at school than they would at home and vice versa. Assessors should see the child in a variety of settings, although I appreciate that clinicians time is limited.

5 D Views on what is important for professionals to know about children with autism before they start to test them. Avoid open questions Know as much about the child beforehand Be open-minded and do not have a text book idea of autism, otherwise autism may be missed They should be aware that it is sometimes difficult for a child with autism to understand the role of a professional undertaking an assessment. I used to be desperately keen to develop relationships with adults I encountered. I wanted to make them like me, and was sometimes very, very hurt when engagements were brief and came to a sudden end. What makes the child anxious Their developmental history What their special interests are Whether they have sensory issues that would make the assessment room unpleasant for them Has the child had a good experience of being assessed before- as if not, the child may arrive at the assessment very anxious. Let the child know exactly what is going to be happening, so that the process can be as predictable as possible. Likely stress triggers, interests and motivations As well as individual knowledge of the children someone wishes to test, they should also have a good working knowledge of how being autistic can affect people (and not just from a deficit/medical model). That people on the spectrum are at a different point and have a different perspective Remember clothing and fragrance are important Explain the results to families Include in the report lots of positives about the person

6 E Other thoughts about how professionals might get a good picture of what a young child with autism is able to do? I relied on those around me to initiate and suggest things, so wouldn t necessarily have communicated my abilities in a proactive manner. Also, the abilities of those with autism are not necessarily things that come up in daily life and may therefore be easily missed. Therefore a process of educated-guessing and reflective practice is necessary in order to tease out skills. I think it is so important to bear in mind that in assessing a child or in instigating any intervention, perceptions and scripts are potentially taken in by the child and carried through life. This can potentially be damaging to the mental health and self-esteem of the child in later life. What I mean by this is that if a professional were to assess that a child lacked certain social skills and set in place an intervention or learning objective to address this, certain cues are potentially given to the child I have to act in a certain way in order to be liked/to be a good person, There is something wrong with me, There are rules that I need to follow in order to be accepted, I need to have more friends, the fact that I don t have friends means that there is something wrong with me. Professionals need to be aware that these kinds of thoughts can be developed at a very young age I had a feeling of being different or wrong from approximately the age of 3 years. I suppose I mean that so much of the time assessment is done in terms of measuring deficits against a supposed normal or ideal, but it is important that alongside assessment and intervention attention is paid to autism-awareness and educating/supporting the child to become comfortable with themself, including the presentation of their autism. Start with the child rather than a ticklist of what it is you are trying to find/identify. Treat every child as an individual and find out as much as you can about them. Often some skills the child has will not be on the surface in situations of anxiety. Getting to know the child is paramount. Value the input of parents/tas/teachers/siblings etc to get a 3D picture of the child s abilities and their difficulties.