When it comes to autism, there is little consistency from person to person, although it is widely accepted that autistic people exhibit some of the following behaviours and difficulties:
- Social interaction across multiple contexts
- Speech and Language impairment
- Repetitive behaviour, including a fixed routine
Autistic children may also have difficulty in other areas, for example, sensory processing issues and delay in fine and/or gross motor development. Some counties in the UK will diagnose these separately but, in my area, they tend to be attributed to ‘just autism’ which can make it very difficult to get intervention, on the NHS or otherwise.
I preach to new autism parents that early intervention is key to successful outcomes. It is believed in psychiatry circles that if a child does not achieve competency in a language by the age they begin puberty, they never will (check out Genie, the feral child, for a tragic case where severe neglect and privation meant she never learned to communicate effectively, rather than autism). This stuck in my head and I prayed that one day Jack would find his voice. Thankfully, by the time he hit his 5th birthday, we saw a massive improvement and now he communicates pretty effectively.
Over the years, Jack has had input from many agencies, including:
- Portage – a pre-primary education and intervention service
- Speech and Language Therapy – first initiated age 2
- Physiotherapy – assessment of his fine and gross motor skills, where they highlighted he had probable Developmental Coordination Disorder (DCD)
- Occupational Therapy for Physical Disability – setting tasks to help improve his coordination and to work on the hypermobile joints in his fingers
- Occupational Therapy for Sensory Issues – this didn’t highlight much and was done at the request of his school. The NHS refuse this service to so many children who need it, and we went private because it would be a ridiculous wait to get re-referred to CYPS, and they could refuse to provide the service even after the wait.
- Bilateral Integration and Primitive Reflex Therapy intervention – Andy Dalziell, founder of bettermoversandthinkers.com provides therapies based on the theory that issues can arise from children retaining primitive reflexes, as well as prescribing a programme to help with bilateral integration. Not available on the NHS, we sought this privately.
- CYPS – known in other areas as CAMHS (child and adolescent mental health service), the Children and Young People’s Service diagnose children with mental health issues and neurodisabilities, among other things. This is where we got our autism diagnosis.
- Community Paediatrics – not entirely sure what they were meant to do, but I’m certain they didn’t do it.
I’ve probably missed a few, but you get the picture.
Last year, I wanted to attend a course with the Toby Henderson Trust, so I emailed the lovely Lynda asking for a place, and I also commented that it was a shame they didn’t offer anything to kids pre-diagnosis. Well, Lynda informed me that actually, they do offer to help if and where they can, and I had been misinformed by my friends. After meeting with the locally famous Lesley Henderson, Jack was offered a place in one of their social groups.
An observation was done and it was determined he would join a few other little boys, once a week, where they would do structured activities in a bid to scaffold the opportunity for interaction between the children. And so, for a year, we have gone every Tuesday to Toby House, where he meets his friends and learns life skills while working in a small group with a high level of support. This is where we have been today.
I’m not sure what happens in that room (not in any detail), but Jack seems to be making real progress in it. Outside the group, when he sees the other boys, their little friendships are a joy to behold. But most importantly, these skills are beginning to show in other environments too, particularly in school. He has made friends with a few other little people, mainly girls, and they have even been for play dates! This year, for the first time, he wants a birthday party. I never thought the day would come where he had enough friends to warrant a big party!
I have nothing but love for the Toby Henderson Trust and all the people there. Without their help, for not just Jack but myself too (I had 15 months of psychotherapy via their service), I don’t think we would be where we are. I will be gutted when our time with the social group comes to an end – there is now a waiting list, and children who have been accessing the service for a while are being moved on so others can benefit from the magic. But I know we will continue to access them for years to come. Hopefully Jack will go on to join MATES, a social club for autistic children run from Toby House.
If you or someone you know may benefit from the services on offer at the Toby Henderson Trust, or to donate to enable them to continue the wonderful work they do, hop along to their website at http://www.ttht.co.uk.