Some people do not like South Park, but it is a good example of genuine inclusion
The number of children with autism and intellectual disability continues to rise and this is putting a strain on government resources in many parts of the world. Increasing budgets can never match the increased perception of needs.
In spite of the vast amounts of money being spent very little attention is given to evaluating what gives the best results.
In the US it has long been put forward that the earlier the intervention starts the better the results will be and often it is stated that 40 hours a week of one-to-one therapy is needed. This view is generally limited to the US.
ABA therapy became a big business in the US and many providers are now owned by private equity investors.
I did point out that in the book the Politics of Autism, the author recounts her discussions with the founding father of ABA, Ivar Lovaas, that revealed he had rigged his clinical studies by excluding those children who did not respond to his 40 hours a week therapy from the final results. He just dropped them before the end of the trial. This would totally invalidate his conclusions.
There is a recent study on this very subject.
Rethinking the Gold Standard for Autism Treatment
Research shows some autistic children may get more treatment hours than needed.
The JAMA Pediatrics study looked at the relationship between the amount of intervention provided (hours per day, duration, and cumulative intensity) and the outcomes for young autistic children. Researchers analyzed data from 144 studies involving more than 9,000 children, making it one of the most comprehensive analyses of its kind.
Contrary to what many have long believed, the study found no significant association between the amount of intervention and improved developmental outcomes. As the authors write, “health professionals recommending interventions should be advised that there is little robust evidence supporting the provision of intensive intervention.”
A total of 144 studies including 9038 children (mean [SD] age, 49.3 [17.2] months; mean [SD] percent males, 82.6% [12.7%]) were included in this analysis. None of the meta-regression models evidenced a significant, positive association between any index of intervention amount and intervention effect size when considered within intervention type.
Conclusions and Relevance Findings of this meta-analysis do not support the assertion that intervention effects increase with increasing amounts of intervention. Health professionals recommending interventions should be advised that there is little robust evidence supporting the provision of intensive intervention.
Some parents in the US get to the bizarre situation where their child can receive 40 hours of ABA for free, but if they say they want only 20 hours because they have other activities for the rest of the week, this is refused. It is the full 40 hours or none.
School segregation
Segregation is a word with negative connotations, but it is used when it comes to the merits of inclusive education versus special schools.
There are many ways in which schools are segregated, including
By sex
It is still very common to have separate boys' schools and girls' schools in many countries
By religion
Religious schools are common in both public and private sectors
By ethnicity
This was widely practiced in the United States and South Africa. The legacy of these policies is still evident today.
By ability
Selecting pupils by academic level is very common.
By disability
Segregation of those with learning disabilities into special schools or special classes within a mainstream school is widespread.
By socioeconomic status
Segregation by the ability to pay is common all over the world. In parts of the world there is no schooling for those whose family cannot afford it.
Homeschooling
In parts of the world homeschooling is legal and thriving. The US has by far the largest contingent, with 6% of children home-schooled. In Germany it is illegal.
What is the best type of school for level 3 autism?
There is no “best” choice.
From the parents' perspective, some are desperate for their child to attend a special(ist) school and some are desperate not to attend such a school.
Some parents choose to home school.
Some parents look for some kind of hybrid solution.
Most parents just take what is given to them.
Inclusion vs segregation
The key issue here is whether the child is “includable”. It is fashionable in Western countries to be anti-segregation and pro inclusion.
Some children are not includable and some school environments are hostile rather than welcoming. Even some children with level 1 autism struggle to cope in mainstream school.
Monty was lucky and completed all his schooling in a mainstream school with very small class sizes, about 12 pupils. He had his own teaching assistant throughout. Two of his former assistants later became class teachers at his school. We paid for the school and the assistants.
Had Monty attended a school with 30 children in the class with 3 other special needs kids, each with their own teaching assistant, the result would not have been so good.
As you can see it is a question of “inclusion in what” versus “segregation in what”.
What is the purpose of “school”
If you talk to parents of older children you will discover that over the years their view of schooling changes. It is an illusion, one grandfather told me. For many schooling is just daycare for the pupil and respite care for the parents.
Some parents do not want their child to be just taught daily living skills, they want the academic curriculum.
Some schools teach non-verbal children an alternative method of communication, whereas other do not bother.
It is not surprising that the result is often nobody is satisfied.
Peter’s idea about schooling for level 3 autism
I would require all children with level 3 autism to be taught at primary/elementary school a means of communication. Remarkably this is not done.
Proactive parents have been doing this for decades at home, but what if your parents are not proactive?
I read the other day that a mother commented that her non-verbal 7 year old daughter would greatly benefit from an augmentative communication device, but that the council/municipality did not want to provide one. In previous decades these were expensive devices, but nowadays these are just apps that you install on an iPad, or android device. Some of these apps are even free !!
Clearly, I would ensure all pupils with level 3 autism were screened and treated for any type of treatable intellectual disability, the most common one being elevated chloride inside neurons, which was the case for Monty.
I recently was contacted by a parent who, after trying to help his son for 7 years, has finally had success by increasing his dose of leucovorin (calcium folinate). Now his son responds to verbal instructions like "wash your hands".
Some of these children, once under medical treatment, will be able to follow much of the core academic curriculum and be genuinely included in mainstream classes. That was the outcome for Monty, now aged 21.
Children who remain with a lower IQ should not be in classes that teach academic concepts far above their level of understanding. This is pointless and will just lead to frustration.
One non-verbal child I know, who cannot read or write is “taught” a second language at school. How about teaching him a first language?
Children should be taught in groups of similar ability/functioning level, rather than grouping them by age. I thought this would be just common sense, but not in the world of education.
If the material has not been mastered there is no point moving forward, just repeat it. After 15 years at school there should have been measurable progress.
Beware of prompt-dependence and assistant-dependence. Skills learned at school need to be such that the child can apply them independently and can generalize them to new situations. Some wealthy schools provide very high levels of support and this risks that the child will become an adult dependent on a similar level of support. This is an example of “too much of a good thing”.
The services “cliff-edge”
Some people with autism, and their families, receive very considerable support for two decades and become dependent on it. At some point in early adulthood these supports may get abruptly withdrawn.
In other parts of the world, there was only ever very minimal support and the family became more self-reliant and so do not experience such a cliff-edge. The family and the young adult learnt to cope.
Level 1 autism / Asperger’s
This post is about level 3 autism, but I am always surprised how many people with level 1 autism write to me so here are some thoughts on them.
You would think that all people with level 1 autism should be able to thrive in mainstream education these days. There is so much in the media, or social media, about accommodating differences and promoting the “able disabled” who are featured everywhere, so how come kids at school are still bullying/tormenting their classmates who are 1% different. Times have not really changed as much as we might have thought.
Most kids with level 3 autism love going to school. Monty adored it.
Many kids with level 1 autism clearly hate it.
During my time helping to run my children’s school one of the things teachers told me was that kids are actually very supportive of those who are clearly disabled but will delight in picking on kids who are a tiny bit different.
The net result is that many children with level 1 autism thoroughly enjoyed their on-line education during the pandemic away from all that awkwardness at school.
Many parents whose child goes to a special school for autism or Down syndrome are completely unaware that there are also some special schools for level 1 autism. It greatly surprised me.
Conclusion
The idea of trying to educate children with level 3 autism is relatively new. In the recent past they were just put aside in institutions and forgotten about. Today much is possible, but a lot comes down to who the parents are and where they happen to live.
The Education for All Handicapped Children Act (EAHCA) of 1975 (later renamed the Individuals with Disabilities Education Act, or IDEA, in 1990) was the major turning point in the US. This ultimately opened the door to a flood of ABA, paid for by private health insurance, but only in the US.
My doctor mother once commented to me that we had shown that such children can be taught and can genuinely learn. This was a combination of personalized medicine and personalized learning.
Good things don’t just happen, you have to make them happen.
The outcome in level 3 autism is hugely variable and that is rather sad.