Having four boys all with the same diagnosis of classic autism doesn’t necessarily mean that they all have the same needs educationally or socially. If autism were to be broken down into sub categories, my four would perhaps fit into the same category. They were all diagnosed by the age of three with classic, non-verbal autism. No wonder it is so hard to find the right education that each child needs when they all have such varying needs and are all under the umbrella diagnosis of autism. When you read the label, autism, applied to a child, the image you think of will be different for every person who reads it and for every child they meet.
In our family, all our boys have had full statements of special educational needs from the age of three. They will hopefully be converted to EHCPs in the near future but the principles of the education they need and deserve remains the same, which is different for each child despite the same diagnosis.
Our eldest are non identical twins and I chose for them to attend different preschool nurseries as their needs were different even at that young age. One son went to a Montessori nursery with his 1:1 and his brother went to a nursery which was more free play and free choice. One coped better in a more structured environment while the other was unable to follow rules at the time. My two younger sons also attended different nurseries, one at a slightly more creative Montessori and the other at a church group which was very nurturing; so, four preschool nurseries for four very different children.
I made a decision early on to try to send the boys to mainstream settings despite their almost nonexistent language and their social and behavioural problems. This was for a few reasons. Our situation is fairly unique and I felt that if the boys went to autism specific nurseries, they would never experience ‘normal’ life. They were also outgoing and social despite their difficulties. I do think that this needs to be a very individual choice. A child may have no language but be social and not overly affected in a sensory way and so be able to attend a mainstream school. Conversely, a child may be relatively high functioning and verbal but be easily distressed by the noise and chaos of mainstream school. So the choice cannot be made on where on the autistic spectrum a child may be placed but rather on their social adaptive behaviour. It may be that a mainstream school is useful for key stage 1 so that a child is socialised at a young age but if they are really unable to access any of the curriculum, then it might be more suitable to place them in a more specialist school by key stage 2. I think it is easier to move from mainstream into a special needs environment than to do the reverse but it all depends on the child’s needs and abilities. We also want to avoid school becoming a place where a child does not wish to go, this is perhaps one of the most important considerations. However suitable the school may seem, if the child finds it a hostile environment, no learning will take place. It may not be the school’s fault but serious sensory issues to blame.
Alongside nursery, the boys all had a full programme of 1:1 ABA support for 35 hours a week which we managed to get on their statements after three successful tribunals against our local LA. I managed the programmes and recruited the tutors who accompanied the boys to nursery and then onto mainstream primary school. The system works best within mainstream when possible as the children learn from others and model their behaviour on theirs. Again, this doesn’t work for everyone. We had problems with the first mainstream primary the boys attended as it can be difficult for both sides when the parents are managing the 1:1 staff and not the school. We moved to another very supportive local mainstream and have had an excellent relationship ever since. All four boys went to the same primary and my youngest is still there full time with his 1:1 ABA tutors.
Our twins still had severe deficits particularly in language by year 6. They needed a special needs school at secondary age. The teenage years are hard for any child and while at primary, other children tend to be very supportive and inclusive of special needs it is not always the case with other teenagers. Along with the social difficulties, having a low level of language means that exams such as GCSEs may not be attainable so mainstream secondary with 1:1 support wasn’t suitable. Schools need to provide differentiation but also to offer alternative exam routes. Again I decided against an autism specific provision. They attend an independent school out of borough as there is very little to choose from within our borough. The school is small and supportive and offers speech therapy and small classes alongside a choice of qualifications. One of the bonuses of being within a mixed cohort has meant a continuing increase in language as they have had to work hard to be able to converse with their peers.
Our middle son attends a large, independent school for specific learning difficulties. They take a high number of more able boys with high functioning autism but require the boys to be capable of mainstream exams. Having smaller classes of a maximum of ten boys and offering a high level of support to the pupils ensures that they each reach their own potential. He is more able academically than his brothers and has a higher level of language now and general ability despite having the same deficits as they did at the time of his diagnosis. For some reason, he progressed more despite the same family circumstances, the same primary school and indeed the same ABA tutors.
He proves that a child’s abilities are not just subject to the teaching or environment provided but also due perhaps to his intrinsic level of autism. It also shows that we don’t know how each individual child may progress so they must all be given an equal chance. Our boys were all non verbal at diagnosis but now have useable language, some children with autism may never acquire verbal language and will need schools appropriate for their needs. What we do need to do is to ensure that each child reaches their own potential whatever that may be. Careful consideration of a choice of schools is paramount to this. Unfortunately, there is not enough choice available which often means as in my son’s case, that he has to travel a long distance to school which makes his days very long. For some children, Monday to Friday boarding or residential schools may be the only option to provide the teaching environment which they need.
Our youngest is still at local mainstream school and we don’t know yet whether he will follow any of his brothers to their current schools or whether we will find a different path for him. It will depend on his abilities and needs at the time.
(This article was published in SEN Magazine in June 2017. All the boys are now at different educational placements).
Sarah Ziegel - Author 