Education, support and research for early years autism

Case Studies

Case Studies: sharing real-life outcomes and positive experiences.

Puzzle Centre: Getting it right for Early Intervention by Grandparent of a former Puzzle pupil.

“Our grandson went to a small, local playschool where the kind staff tried valiantly to help him, but it was quite disastrous for him, the staff assigned to him and also the other children. He then got a place at Puzzle, despite not having a Statement of Educational Need, and within weeks we saw what wonderful work they could achieve with him. (Our grandson) so wants to learn and is doing so in leaps and bounds.”

When our grandson first came to Puzzle Centre aged two or three, his communication skills was either very limited or non-verbal. Puzzle Centre’s primary objective is to help children communicate more effectively. It does this using a range of alternative forms of communication including Makaton signing; the Picture Exchange Communications System (PECS); widespread symbols in, for example, a visual timetable; and a visually structured environment using the TEACCH approach. Staff are also trained in the new SCERTS approach that has been developed in the United States and are now beginning to implement this cutting edge framework within the nursery.

Read the full case study article on the Autism Education Trust website.

Punam – Parent at the Puzzle Centre, March 2009

“Our child was diagnosed with Autism at the age of 2, following our concerns of him not developing any language and generally appearing aloof at any attempts to communicate with him. Initially we were distraught and almost felt we went through a bereavement – the loss of our so-called ‘normal’ son. But fortunately for us those negative and sometimes very helpless feelings were soon taken over by this burning desire to reach out to our beautiful and immensely adorable ‘autistic’ son.

From very early on we spent a lot of time researching his condition and realised that EARLY INTERVENTION was going to be the key to his progress. Being his parents, being his best resources, we knew we had to firstly educate ourselves on ways to best facilitate his learning and development. Having been on the Earlybird, Son rise and ABA as well as numerous other training courses, we realised that although they appeared to be very different, one common element became evident – that our son needed intensive one to one learning opportunities geared at his level with his maximum motivation.

From a pool full of information we managed to pick out best practices and appropriate strategies which we felt could and would benefit our son we started to see considerable progress. Keeping language simple and clear increased his understanding tremendously. By using visual cues and timetables we realised that he was able to comprehend the world around him better. Especially the employment of psychology students playing and structuring activities at home with our son brought about joint attention and the need to want to communicate with others while having fun.

However, to find this kind of specialist understanding of our son’s specific needs in an early years education setting proved to be a difficult task. Eventually we had little choice but to send him to a local mainstream pre-school. Without having specialist expertise, with all due respect to their efforts to accommodate our son as best as possible, for much of his time there he appeared to be very anxious. He avoided other children, would get upset if another child tried to play with him and had very little means of communicating his needs. Due to his sensitive sensory issues the loud crowded environment meant he was unable to participate in activities like story time and circle time – further unabling any opportunities of shared interaction. Hence his play became more and more solitary, non-purposeful and meaningless in terms of his development. It was very frustrating because we knew what our child would benefit from but knew no way of finding it. With very little help and advice we weren’t aware we had rights as parents to ask for more specific help in the form of a statement.

Coincidently about that time one of the mums at my Earlybird course informed me about a specialist nursery near Buckingham, the Puzzle Centre. As crazy as it sounds we only thought we would go and see it with no intention to commute 50 odd miles on a daily basis.

Little did we know that after having viewed the place we would see it as a sin not to send him there. It had everything our son needed to overcome his difficulties – small group, specialist staff, individual educational targets, visually structured timetable and activities with a great emphasis on social awareness and joint attention. It was as if this unique setup was specifically designed to meet his needs.

Fortunately for us Puzzle kindly offered our son a place even without any funding for his placement, using their charity fund. For the first time ever we felt we were no longer alone in wanting the best for our child. Once we had the evidence to highlight the amount of progress our son had made in a short span of being there, and after many long battles, we eventually managed to convince our local authority that they, via a Statement of Special Educational Need, should fund his placement at Puzzle.

Our boy has been at Puzzle, for nearly two years now and the progress he has made is phenomenal. From having very little means of communication he is now able to respond to, as well as initiate spontaneous interactive short sentences. The progress is just amazing. His understanding of the world around him is increasing rapidly, showing that if our children are given the right environment in which they can appropriately access the learning opportunities available then we can expect them to develop, albeit at their own pace.

Having witnessed such remarkable progress with our child, I would strongly advocate that there is a great need for such educational settings which uniquely cater for pre-school children with autism spectrum disorders, working in close partnership with their parents for the best all round results.

It can be challenging to have a special needs child but finding the right educational setting is probably the biggest challenge special needs families face, however we count ourselves very lucky to have found the Puzzle Centre.”

Harrison’s story

Before Puzzle

Harrison was diagnosed with autism when he was just over 2 years old. Karen describes receiving the news from the paediatrician as ”like having a bombshell dropped on her”. She knew nobody with autism and very little about what it meant. Some of the medical profession seemed very negative about Harrison’s chances, telling her over and over again that he might never talk. It was a very difficult time for the family.

When Karen tried taking Harrison to toddler groups, he just wasn’t interested in the activities on offer and would not engage with the other children or adults – “it was as if they didn’t exist”. Harrison could not speak and he wouldn’t look up if you said his name. Karen remembers the day of his hearing test as being one of the worst days of all. When the medical staff rang a school bell right next to Harrison’s ear and he didn’t show any sign of hearing it, Karen was told ‘this boy’s not normal’!

Early days at Puzzle

When Harrison started at Puzzle, he wasn’t able to talk at all. He wouldn’t look at anyone – there was just no interaction. Karen was very nervous about Harrison going to Puzzle but Harrison seemed to settle. Her overriding memory about the early days is how extremely positive Puzzle staff have always been about Harrison’s chances. After being told by so many medical professionals that Harrison might never talk, never do anything at all, Karen found that Puzzle was different – they made her believe that there was hope and this made a huge difference.

In practical terms, the family learned about visual timetables and PECs (The Picture Exchange Communication System) from Puzzle staff and ordered and made all the resources and supported Harrison at home – they made sure his PECs book went everywhere with him, including up to bed!
Karen also valued the opportunity to meet other people “in the same boat” as her. She said “at home, you don’t think there is anyone else in this position..” Through Puzzle, Karen has met other Mums and they have become good friends. For Karen, it has provided an invaluable support network of people who can compare notes about their children.

Harrison now

Thinking about Harrison now, Karen says “You would not believe he is the same boy who came in to Puzzle. The staff have been marvellous, always so positive. Through PECs, Harrison has learned to speak. He could not say Mummy – now he can! This year, he has started to ask questions and you can have a conversation with him now. Family life has changed so much. Harrison now talks to his sister, Georgia. Before it was like she did not have a brother.” Now, Georgia has taught him all the names of the Moshi Monsters and Harrison gives her lots of hugs!

The family could never go to parties or social events together because Harrison would become incredibly stressed or just sit in the corner and ignore everyone. He hated ‘Happy Birthday’ being sung and would put his hands over his ears and became so upset that Karen actually banned it from being sung at home. Now he asks “Whose party next?” and says “Happy Birthday again!” He wants to go to parties, says ‘Hello’ to everyone and joins in with the singing!

Through attending Puzzle, it appears that Harrison has developed coping mechanisms. Harrison used to cover his ears and shake at the sound of the ice cream van, or babies crying in the supermarket. Now when he hears the ice cream van he says “Want ice lolly Mummy!” Now if he has a meltdown about something, Karen can reason with him and he can understand. He copes better with disappointment and with changes to his routine.

Next steps

For Karen, and her husband Mark, a huge decision was where to send Harrison to school in September. They had assumed, that Harrison should go to a Special School. However, Puzzle staff felt that even though at that time Harrison wasn’t talking, he had such huge learning potential that Karen should explore a small mainstream school for him. They were reassured by their visit to Stoke Mandeville school and Harrison has been given a place there for September. On a recent familiarisation visit, Karen was delighted to see him playing on the school field surrounded by other children holding his hands. Puzzle staff had encouraged Karen and Mark to consider a mainstream school. He has changed so much in the last few months that Karen and Mark believe this is the right place for Harrison to build on the progress he has made since starting at Puzzle Centre two years ago.

Gabriel’s Story

Gabriel started at Puzzle Centre in September 2010 aged just over three years old. He had much difficulty following verbal instructions, joining any kind of group activity and moving from one activity to the next. He was not using any spoken language to communicate his needs. His mother commented: “When I look at our son’s progress it seems miraculous that when he arrived with you he was unable to communicate, play or cope with any change in situation.”
Gabriel moved on at the end of July 2012, aged 5 years old, to a fully inclusive mainstream school. He had made significant progress in his communication and interaction skills and was beginning to read whole words. He was able to use quite complex sentences to express himself. This, in turn, has helped him to interact with others more successfully. His mother commented “What we have now is a truly remarkable little boy who is not just coping but flourishing in mainstream education.”

Isobel’s Story : child minder goes the distance for autism

Child minder, 55 year old David Rasmussen will be taking on the challenge of a lifetime this month running the first Milton Keynes Marathon. His inspiration is four year old Isobel Rose, from Akeley, who was diagnosed with autism 18 months ago.

Isobel’s child minders since she was a baby, David and wife Fay from Buckingham, have experienced first hand Isobel’s journey from being diagnosed with autism, to the confident little girl she is today.

In the past eight months Isobel has gone from being unable to verbally communicate, to stringing sentences together and even counting in Spanish.
David attributes this transformation to the specialised early intervention care she has received from the Puzzle Centre in Buckinghamshire.

“ When we first began dropping her off she didn’t say one word, now when we pick her up the nursery staff give us a list of 20 words that she’s said that day. She is picking up new words and she can even count to ten in Spanish”.

A first time marathon runner, David was inspired to enter the race to allow children like Isobel to benefit from early years intervention,

“I’d been thinking about how I could fundraise for Puzzle and then I saw an advert for the MK marathon and thought, why not! The fact that it’s the first one makes it that bit more special, but ultimately its about raising as much money as possible”

Isobel’s mother, Michelle Rose 33 is overwhelmed at the progress her daughter has made in the past year.

“A year ago I wasn’t sure if she would ever be able to communicate verbally, but eight months later she can string sentences together, learns new words, and she is beginning to interact socially”

Michelle explains that Isobel’s diagnosis was particularly difficult to get, as autism is much rarer in girls than in boys. She reflects on her reaction when she was finally given the diagnosis,

“ I didn’t want to believe it. It takes away any control you think you have as a parent. When your child gets sick, you give them medicine and make them better. With autism it’s not that simple, you can’t just click your fingers”

Finding out about the Puzzle Centre through Isobel’s paediatrician she contacted them unsure of what to expect.

“Before we began bringing Issy here, neither my husband or I knew whether or not we were doing the right thing with her. Now we are given guidance on what to do to help her improve. Some things work, some things don’t, as is the nature of autism but every little step she makes is a huge leap for us”

With World Autism Awareness day taking place this week 2nd of April, Michelle believes strongly in the need for awareness about the options available for parents with autistic children,

“Just because you have a child with autism it doesn’t mean you know anything about autism yourself. Early intervention has been massively important in Issy’s development so far and if we weren’t aware of that option we may be in a very different place. If she can begin communicating at this early age who knows what the future holds for her”