Submission
No 148
INQUIRY INTO SERVICES FOR PEOPLE WITH AUTISM SPECTRUM
DISORDER
Organisation: Anne McDonald Centre
Date Received: 27 September 2016
Submission $148 Received 27/09/2016
Family and Community Development Committee
Catastrophic Misuse of Inappropriate IQ Tests
with People with ASD and Little or No Speech.
Submission to the Parliamentary Inquiry into Services for People with ASD
The Anne McDonald Centre, 538 Dandenong Road, Caulfield 3162
The Anne McDonald Centre is a small but very active centre that provides communication therapy to children and adults with little or no speech. About 80% of our clients have diagnoses of ASD, and about 50% are from non-english speaking backgrounds. We wish to draw the Inquiry’s attention to a major problem affecting all people with ASD and little or no speech. Our submission is late because the investigation on which it is based was only completed in May
- Since then we have presented the outcomes at 3 international conferences.
For decades many thousands of students with autism and little or no speech have been mis-assessed by the Victorian Department of Education and Training (DET). DET insists on using Intelligence Tests requiring normal fluent speech to assess the cognitive potential of children who can’t talk, specifically the Weschler Intelligence Scale for Children (WISC), for children aged less than 16, and the Weschler Adult Intelligence Scale (WAIS) for students older than 16. This is as sensible as using a tartan-matching test to assess a blind child.
Most of these children, of whom the majority have diagnoses of severe autism, cannot answer any of the questions, not because they do not understand the questions or know the answers, but because they cannot say the answers, and do not have the fine motor skills to do the performance tasks. Stephen Hawking would fail the WAIS!
DET advises the psychologists who administer the IQ tests that if a student is untestable, because they can’t talk, or don’t co-operate, then the psychologist should just estimate the child’s intelligence. Consequently many Victorian children with little or no speech are labeled as having IQ’s well below 50 on the basis of a psychologist’s guess. Most are placed in Special Developmental Schools (SDSs) for children with IQs <50 where they are offered very limited educational programs - being asked to match colours and count to 5, year after year. The negative expectations generated by the “score” they are given affect therapy provision as well, and most of these children are either given very basic communication aids or none at all.
Our experience, based on our work with thousands of students with autism and little or no speech, indicates that there is a very high probability of these children being significantly underestimated.
Four examples from one SDS
Late in 2014 the parents of 4 students with autism without functional speech who were attending an SDS for children with IQs less than 50 brought their children to the Anne McDonald Centre. Two of these students are now 13 and two are now 19.
According to the parents, the school had previously made no effort to provide these students (or any of their scores of other non-‐speaking students) with any communication aids to enable them to speak or to participate in class. This is despite communication aids up to a cost of $7,000 being funded by the Victorian Department of Human Services, and being readily available to anyone who needs one, with no waiting list.
All 4 of these students tested in the average range or above on a Peabody Picture Vocabulary Test, a standardised general knowledge and receptive language test which does not require speech or fine motor skills. All also demonstrated useful literacy skills, picked up from iPads, You Tube and being read to at home. All went on to use sophisticated communication aids, despite the rejection of communication aids by their SDS.
The damage to these students and their families is incalculable. The 18-‐ year-‐olds left school without any education in math, science, history or geography. They are trying to catch up 12 years of missed communication and conversation. They have been subjected to 12 years of inappropriate education about which they were totally unable to complain. The frustration and stress have contributed to depression and severe behaviour problems.
After a documented and published history of abuse, the 12-‐year-‐olds moved into an ordinary primary school in 2015. Unfortunately the new school’s expectations were still negatively affected by the outcomes of their inappropriate IQ testing. Consequently the students were still not allowed to access the regular curriculum, or to try and catch up with what they’d missed, despite now having the tools to do so.
The 4 students mentioned above are representative of thousands of other students with little or no speech with ASD, who have been assessed using inappropriate tests, and are receiving or have received an inappropriate and severely limiting education as a result.
For decades our attempts to point out the obvious practical and ethical problems of purporting to assess children with ASD and little or no speech (most of whom also have impaired hand skills) by using tests requiring normal speech and fine motor skills had fallen on deaf ears. They did so again in 2015.
This year we decided undertake a hands-‐on trial of different tests, not requiring speech, with as many students with little or no speech as we could from February to May, to see if our assumptions were correct.
Comparison of speech and non-‐speech tests
We offered children and young adults with little or no speech who had been assessed as having IQs less than 50 on Weschler tests requiring speech an opportunity to undertake standardized tests that did not require speech or fine motor skills.
The non-‐speech tests we chose were the Peabody Picture Vocabulary Test 4 (PPVT 4) and Raven’s Standard Progressive Matrices (RSPM).
By May 2016 25 children and young adults with little or no speech, 23 of who had been diagnosed as having ASD, had completed the Peabody Picture Vocabulary Test. The results are both very surprising and very worrying. All 23 were tested in the ordinary way with the PPVT, and all scored in the average range or better. Twenty of the assessments were videotaped. Details are in Attachment 1, below.
It should be emphasised that this was not a specially selected group. They were clients of the Anne McDonald Centre who happened to attend from February to May 2016, who had the prerequisite skills for undertaking the PPVT -‐ adequate sight and hearing, ability to select from 4 pictures without assistance, and ability to attend to a task for 10 minutes at a time, whose families gave consent to their participation. (Selection and attention skills are taught at our Centre – the students may not have had these at first contact.)
Sadly, sixteen of the 23 with ASD are still in schools where they are treated as significantly cognitively impaired. They receive little or no appropriate communication intervention, and their academic programs are often at pre-‐school level. Those who have aged-‐out of school are attending adult programs where they are also treated as significantly cognitively impaired, because their histories follow them.
There are thousands of students with ASD and little or no speech in the Victorian school system. The vast majority have been assessed as having IQs less than 50. It is likely that the majority of those students have also been mis-‐ assessed.
The distress and frustration caused by mis-‐assessment is incalculable. Most parents and teachers are unaware that DET has been using inappropriate tests. And students without speech cannot complain other than by acting out, at school and at home.
Recently staff from the Department of Education and Training have expressed concern and interest in addressing the problem, however they need more resources and power to implement the massive changes required.
It is not just a matter of changing the assessment protocols, though that has to be done as a matter of urgency. The entire system of Special Developmental and Autism schools needs to be reviewed, because it is based on a presumption of incompetence, based on dubious test results.
Changes Needed
DET should instruct the agencies to which it outsources assessment not to use tests requiring speech with children with little or no speech.
DET should automatically refer children who are “untestable” due to their lack of speech for intensive expert communication intervention, with a view to assessing their abilities with a more appropriate test once they have a means of communication. Anyone who can indicate Yes and No reliably is assessable, but sadly most of these children are not even provided with a strategy for answering Yes and No, on the mistaken ground that it is too abstract. (Speaking one and two-‐year-‐olds learn to use Yes and No – especially No – very well.)
ALL students with little or no speech who have been labeled as significantly intellectually impaired on the bases of tests requiring speech need to be re-‐assessed, but after they are given some access to appropriate communication aids and educational input, not before. Given the appalling lack of communication therapy in the SDSs, where many students only receive one short group session of speech therapy a week or fortnight, this is a major exercise.
Moving to reliable assessments for children with severe autism involves obtaining alternative tests such as the PPVT and Ravens and training psychologists in their use. The Australian Psychological Society needs to be involved, especially their ethics and assessment subcommittees, who share the responsibility for the training of psychologists with the universities. It is not ethical or acceptable to teach psychologists to administer assessments regardless of whether those being assessed have the basic prerequisites to undertake the tests. It licenses prejudice.
Teachers’ expectations and teaching strategies need to be reshaped so they can elicit and extend the real skills of their non-‐speaking students. Speech and handwriting are not essential for the teaching of literacy, or indeed of anything else, but unless teachers are taught about the alternative expressive and assessment strategies available, they won’t be able to use them.
If nothing is done to address DET’s use of inappropriate assessments and the inevitable consequences, yet another generation of students with autism and little of no speech will leave school with no means of communication and a miserable and frustrating future.
We are now seeing many young adults with ASD who have left DET schools with no means of communication, to attend adult centres that provide no therapy services, and that often appear to have no awareness of the needs of people without speech. These are merely the tip of the iceberg,
Last week we saw a young woman with ASD and no speech aged 20, who had left a school for students with IQ less than 50 without any communication aids, not even a Yes/No card. To her parents’ amazement, given access to appropriate equipment, she was able to demonstrate literacy and general knowledge skills they did not realize she had e.g. spelling CANBERRA when asked the name of the capital of Australia. As it happens, the young lady did not act out her frustrations, unlike many of those in her situation. Possibly help would have been sought earlier if she had. What is going to happen to her now?
Please accept our apologies for this late submission. We would be happy to meet with you to discuss this very important issue, which impacts directly on most Victorians with severe autism and their families.
Dr Rosemary Crossley, A.M., M.Ed., Ph.D.,
Anne McDonald Centre Inc.,
538 Dandenong Road,
Caulfield 3162, Victoria, Australia
Ph 03 9509 6324
Appendix 1 Assessment of 25 young people with little or no speech
using the Peabody Picture Vocabulary Test (4th edition)
ID Sex Age at Diagnosis Educational PPVT by | Assessment
assessment | (all diagnoses placement Score videoed
(y.m.) include ID)
17 M_ | 4.4 ASD Kindergarten | HAS Yes
19 M | 4.8 ASD Kindergarten | LAS Yes
5 M | 9.6 ASD Primary School | EHS Yes
2 M | 10.10 ASD SDS MHS Yes
8 M_ | 10.10 ASD SDS MHS Yes
1 M 12.10 Trisomy Primary School | MHS Yes
21 M | 12.11 ASD SDS EHS Yes
22 M | 12.11 ASD SDS HAS Yes
13 M_ | 13.0 ASD SDS MHS Yes
3 M | 13.11 ASD SDS HAS Yes
9 F 13.5 ASD SDS HAS Yes
6 M_ | 14.7 ASD SDS MHS Yes
15 M | 15.1 ASD SDS EHS Yes
20 M_ | 15.10 ASD SDS HAS Yes
12 M | 16.3 ASD SDS HAS Yes
14 M | 16.5 ASD SDS MHS Yes
18 M_ | 17.0 ASD SDS MHS Yes
25 M_ | 17.8 ASD SDS LAS*
24 M | 18.6 ASD SDS LAS*
4 F 18.8 Global D.D. | SDS LAS Yes
7 M_ | 19.0 ASD SDS LAS Yes
11 F 20.1 ASD SDS LAS Yes
16 M_ | 20.8 ASD SDS EHS Yes
10 M | 21.6 ASD SDS HAS Yes
23 M_ | 28.3 ASD SDS HAS
ELS | Extremely low score (<-2SD)
MLS | Moderately low score (-2 to -1 SD)
LAS | Low average score (-1 SD to Average)
HAS | High average score (Average to +1SD)
MHS | Moderately high score (+1SD to +2SD)
EHS | Extremely high score (>+2SD)
SDS _ | Special Developmental School for students with IQ <50
School types listed are those where clients received most of their education.
Appendix 2 How did we get here?
Until recently it was thought that a person’s knowledge and understanding could be judged by their speech and actions. Idiots did not speak: “Having no ideas, and thinking not, they have nothing to desire: therefore have no need of sign, or of speech.” (Esquirol, 1845) “An idiot is any child who never learns to communicate with his kind by speech … this inability being due solely to defective intelligence …” (Binet, 1909) The new IQ tests provided a ‘scientific’ basis for matching intelligence and speech, codifying the ignorance of Esquirol and Binet.
Non-speakers were (and are) assessed using IQ tests requiring speech, with their inability to answer the questions scored as ‘not thinking’. Extraordinarily, this did not change in the 1970’s, despite new communication aids enabling non-speakers once thought to be severely MR to attend schools and universities.
During the 1980’s and 1990’s professionals and organizations providing communication aids to non speakers, including the Anne McDonald Centre, tried to draw attention to the obviously anomaly.
In 2002 the American Speech and Hearing Association declared that “Assessments requiring oral responses should not be administered to people with speech impairments, and people with speech impairments who have been assessed and graded using such tests should be offered supplementary communication and educational services to enable them to use alternative communication modes. …“ (ASHA, 2002)
Nonetheless, on March 7 2016, the Victorian Department of Education wrote: “Standardised measures are used … for determining eligibility … it is essential that procedures are consistent and variations in scores are not attributable to the use of different test instruments. In order to achieve this, a common test is needed. The Weschler tests are recommended … as they are a valid and reliable tool for the assessment of cognitive functioning of children and young people, including those with an intellectual disability … and Australian norms are available. “
We decided to conduct our own assessments and chose 2 standardised widely-used assessments that require no speech and only a pointing response:
The Peabody Picture Vocabulary Test 4 (2007) (PPVT4)
Student chooses between 4 pictures. Normed for ages 2 to 90+.
Raven’s Standard Progressive Matrices (2000) (RSPM & RSPM Parallel)
Student chooses between 6 or 8 diagrams. Normed for ages 6 to 70+.
Results on PPVT IIIR correlate well with results on WISC-IV (Foo et al, 2013). Results on PPVT
TUR also correlate well with results on PPVT 4 (PPVT 4 Manual).
Criteria for students undertaking the PPVT were adequate sight and hearing, ability to select from 4 items independently, ability to sit and focus for a minimum of 10 minutes, previously assessed as IQ <50, and available when videographer free (Feb through April 2016). Age 4 — 30.
Conclusions
The importance of speech and physical capacity in cognitive assessment should be formally recognised. Tests should be classified by, inter alia, the speech and physical skills necessary to complete them. Further research is needed on the development of tests with particular skill sets suited to people with specific impairments. In the meantime, all students with little or no speech should be treated as competent and given access to empowering communication strategies and age appropriate education.
Appendix 3 - photographs of some students doing tests (separate attachment)
Four students involved in our Assessment Project in early 2016
Student 6, male with ASD aged 15.5 PPVT 95th percentile Student 13, male with ASD aged 13.0 PPVT 95th percentile
Raven’s SPM 25th centile Raven’s SPM – Parallel 90th centile Raven’s SPM -‐ Parallel 50th centile
Does Brain Pops at home. Emails me if the topic is interesting.
Student 18, male with ASD aged 17.0 PPVT 86th percentile Student 8, male with ASD aged 10.10 PPVT 95th percentile
Raven’s SPM – Parallel – 60th centile Raven’s SPM – Parallel – 90th centile