After Autism diagnosis support: The Importance of Profiling the Autism of a child
Elizabeth Guest and Jen Blacow
29th July 2021
A relatively quick and appropriately costed autism profile for your child with autism or other form of neurodiversity, after diagnosis, can save a child (who will grow up to be an adult), decades of heartache, frustration, and mental health problems.
At Aspiedent, we do not do autism or any other diagnoses. We help people understand the underlying issues causing their symptoms so that the right support is in place to help a child reach their maximum potential.
What’s the difference between an autism profile and a diagnosis? A diagnosis might state a child struggles with change, for example. But what it does not tell you (usually) is the underlying cause for this difficulty with change.
There are many potential underlying issues for a single autism symptom. What the underlying cause is, is key to how to deal with it. One of the most common examples I give, is ‘struggles with change’.
There are many different underlying reasons for why a child or adult may struggle with change. Two of these many underlying issues could be:
- because they have poor ‘executive functioning’, therefore they struggle to shift their attention (for example) from one thing to another.
- because they have slow processing compared to the general population, and therefore take longer to understand and adjust to the change. Their classmates are moving forward while the child with slow processing is still trying to work out what is going on.
The list could go on…
Both of the above examples can cause anxiety.
However, the difference is the first issue (executive functioning) can be improved, and we would advise on exercises to build up this skill.
The second is a fundamental issue which will not change – therefore we would suggest aids and strategies to minimise the problems caused by this issue.
Until we know what the underlying cause is, we are making stabs in the dark and causing (preventable) problems!
I can’t express to you how long the list of different examples of underlying issues and outward symptoms is, and how to deal with them, is. (It’s our autism profiling tool).
Up until recently, we did autism profiles (aka workplace assessments) on adults, and the youngest we had done was 16. We did not know if it would work for children.
However, recently we were contacted in desperation by two Mothers, both of 11-year-olds, who are finishing primary school and starting secondary school. Well actually, one has given up on going to school together – but would normally be starting secondary school.
Both of these children have a diagnosis and have had a battery of tests from specialists, such as educational psychologists.
We were provided with a lot of information about the children in the form of various assessment reports. All we have to do is to ask the mother a few supplementary questions in order to fill in the gaps.
Given this information, it was not all that difficult to work out what the underlying issues for each child are. Having worked this out, everything fell into place for the parents.
The frustrating thing is that the bulk of the information was already there, it is just that none of the professionals involved had managed to join the dots.
For example, the educational psychologist had worked out that the first child has slow processing. However, it appears they were unable to work out that if a child has slow processing, but is still managing to score in the average range, then that child must actually be more intelligent than the raw scores suggest!
The educational psychologist was also unable to work out the impact on school and everyday life that slow processing was causing.
For example, the educational psychologist seemed unable to work out that slow processing will impact on social interaction, and that this impact would get worse as social interaction becomes more complex as the child in question’s peers mature.
In short, the report that was supposed to help the mother and the school with working with the child and educating them, was little more than a description of the results. There was very little interpretation – that was up to the reader. But most, if not all, laypeople are unable to understand what the various tests are supposed to measure!
One assessor had worked out a basic ‘sensory profile’ for the child and the school were doing their best to accommodate. But there was not a hint of understanding of the impact of this on social interaction and the inability to join in with activities that peers enjoyed such as dancing and acrobatics.
The school provided coloured overlays to help one of the children read, but there was no suggested assessment for Irlen lenses, even though it was clear that reading the board was a problem for the child.
To be fair, though, Irlen lenses are expensive and not something the school should be expected to provide.
But overall, we would hope for a much better service from well paid professionals such as educational psychologists.
The second child mentioned, has given up on school altogether. She got funding to go to an autism specific special school, but they did not know how to deal with her either. Aspiedent are now her last hope. She came with even more reports by assorted professionals, who also have not managed to join the dots.
In this case, this is an extremely intelligent child who just happens to not be able to process visual information and auditory information both at the same time. This is actually pretty much stated in one of the reports.
This is the reason why this child cannot read and write, although she wants to be able to do so – but none of the professionals have been able to work this out.
Just stop and think: reading and writing is taught via both visual and auditory information given at the same time.
This child had no way of telling her teachers what the problem was and was therefore labelled with PDA (Pathological Demand Avoidance) simply because she distracted the teacher when she could not do something no matter how hard she tried, and could not explain why not.
It is no wonder that autistic children are failed by the education system. We deal with many autistic adults who have been failed by the education system. Now we are seeing first-hand how and why it all goes wrong for them.
In a nutshell, nobody has managed to fully understand these children because they are not able to work out the underlying issues which cause the symptoms. It goes wrong early on and sometimes there are inappropriate interventions.
Our experience with these children both of whom qualify for an Educational Health Care Plan (EHCP) has been a real eye opener.
The EHCPs we have seen are completely unwieldy. They contain quotes from numerous reports, but do not even attempt to structure these into a coherent description that makes sense. They are disjointed.
Add to this an apparently random set of ‘reasonable adjustments’ that the school is expected to make and it is no wonder that education goes wrong for so many autistic children!
The reasonable adjustments tend to be standard with little regard as to whether they are likely to help the child or not. So for example, there is a lot of talk of ‘social skills training’ with no regard as to what kind of social skills training would be appropriate, or if the child is likely to benefit from it.
What is the point of teaching facial expression if the child’s processing is so slow that there is no way a child could make use of this training during conversation?
As mentioned above, this is a non-exhaustive description of the issues we have found with diagnosis reports, educational psychologist reports, speech and language assessments and educational health care plans.
Having an Aspiedent autism profile could change the path of a child’s life beyond belief. I have seen first-hand how it has changed adult’s lives, even if they are having to unpick all the misunderstandings from the past.
It would be our dream to offer these profiles for every child who has additional needs or symptoms which could not be explained by other issues such as attachment issues or trauma. However, at the moment we have to charge parents for this which creates a barrier to real, effective, positive change for their child.
For Website: If you think an autism profile is something you would benefit from knowing more about, contact us at firstname.lastname@example.org or on 07717 404846.