Karen's Story

Karen’s story

Worries

When Karen’s twins James and Iona were born 3 years ago, mixed up with all her delight and emotion over bringing 2 brand new and precious lives into the world, was the difficulty of having to adjust to never-ending hospital appointments.

James was born with Atypical Talipes (more commonly known as club foot) and the ensuing frequent visits to paediatricians became Karen’s new ‘normal’. She was forced to cope with constant difficulties for her baby: surgery; having to switch hospitals due to the complexity of his foot conditions and even complications following some of his foot surgery. (After a small surgical procedure called a Tenotomy he was barely able to breathe. He was rushed to hospital in an ambulance and kept in for a couple of days. He'd had an extreme reaction to the general anaesthetic and had to be monitored for 8 weeks by the GP.)

Because James’s health was being monitored so closely, his team were quick to pick up on the fact that he had delays and, at just 15 months, he was diagnosed with ‘Global Developmental Delay’ (GDD). His Paediatrician believed his delays might be due to the trauma produced by his various treatments. He hoped James might catch up with his peers given time. Needless to say, Karen also clung onto that hope.

Autism

The beginning of James’s regression into autism at 21 months was sudden and dramatic. Karen noticed it immediately. “The first sign that something was wrong was that he stopped looking at me,” she told me. “We were on holiday in the Lake District and suddenly James refused to meet my eyes. I was devastated. My husband tried to convince me that it was nothing, but I knew it was autism. Over the next few weeks I saw James disappear. By the time we returned home, James had stopped talking and had begun to chew everything in sight. He lost his skills, lost his interest in playing with his twin sister Iona. He was simply lost. My sweet sociable little boy was changed completely.”

As a fellow autism-parent I understand the impact regression had on Karen. I know only two well how debilitating it feels to watch your child ‘disappear’ into autism. For many of us parents, while we are still reeling from this huge sense of loss and from the emotional trauma of the diagnosis, we can be faced with further crippling realities: unsupportive reactions from loved ones; negative predictions from professionals and the harsh restrictions on our lives that autism brings with it.

James’s regression into autism meant that he became terrified of going out, frightened of all the playgroups Karen had always taken him to and anxious about the physiotherapy appointments that he'd previously loved. Luckily, Karen’s friends were kind but socialising and playdates became almost impossible as all she could do during these supposedly social occasions was hold onto James as he screamed.

Karen’s family also struggled to cope: her husband couldn’t accept the diagnosis until it became official, 9 months later. Even when the paediatrician stated firmly that he believed James had autism, her husband said he'd wait until the diagnostic process was complete before he made up his mind. The extended family had a similar attitude and so, in many ways, Karen felt very alone during this period.

Moving Forward

However her realism meant she began reading and researching autism immediately. Grieving was agony but it helped. “In fact,” she told me, “it was the most useful thing I could have done. It meant I accepted things as they were very early on.”

Almost immediately after James stopped talking Karen made contact with the community SALT who offered a golden nugget of advice. Referring to James’s loss of eye contact she said, "You have to do the reparative work, you're his mother and no one else can do it." Karen set to work to do just that…

Intensive Interaction

She joined parent support-groups and, as soon as someone mentioned Intensive Interaction, she looked it up. …

“It made so much sense to me,” explained Karen. “What I found most painful about ASD was that the bond I'd had with James was gone. I wasn't able to comfort him the way I always had. The world terrified him and I wasn't his anchor in the way that I was for Iona and had previously been for him. Intensive Interaction gave me a way to really connect with him again.”

Unlike my own experience with my son Tom, Intensive Interaction came very easily to Karen, perhaps because James was so young and so close to the age at which this type of interaction takes place naturally. Or perhaps it was because Karen found Intensive Interaction early on before her natural maternal instinct had been undermined or superseded by years of more unnatural autism-interventions.

What the sessions look like

Karen had put effort into trying to play with James before discovering Intensive Interaction, but he'd lost all interest in books during his regression and playing with toys wasn't easy at all. Dropping these agendas and targets to simply follow his lead felt wonderful and therapeutic. The lack of expectations for the sessions made them feel lovely. “I really enjoyed just being with James and he really responded well to that too,” she said. “I don’t have to time-table Intensive Interaction in. It happens so naturally for us. We just do it all the time.” For Karen and her toddler, Intensive Interaction feels instinctive. “It seems to tap into something so sweet and lovely. Often we just eye gaze or I copy the noises he makes. It’s very restful.”

Karen has been doing Intensive Interaction with James for about 1 year now and, for the last 5 months, has been employing an Intensive Interaction- trained SALT to come once a week and play with him. Karen’s husband and James’s twin, Iona, also really enjoy Intensive Interaction sessions with him.

Karen finds that early morning is the time that James is most responsive to Intensive Interaction. That is when she is most likely to notice progress. However, she has also noticed that when he’s tired after a day at nursery, he really benefits from a relaxing and restorative session of Intensive Interaction.

A Special Twin Bond

“The twin bond happens earlier than even the maternal bond and is a very special connection. I witnessed that in my twins,” Karen explains, “so it was awful to see James also reject his sister when he regressed. It has been a very difficult journey for Iona having a twin with regressive autism,” she revealed, “She often talks about his difficulties with speech, play and friends. She's very sensitive and each time she reaches a milestone she wants to discuss why James can't do the things she can. She loves anything to do with twins and I think the fact that Autism broke their bond was deeply unsettling for her. The very best thing about Intensive Interaction is that it has helped her reconnect with her brother.”

Karen says that, although the relationship isn’t quite that of neuro-typical twins, the bond is strong, “Although he can't yet really relate to other children, he often smiles and laughs with her. They often hold hands and she helps him balance while he walks as he can't yet take many independent steps.”

Intensive Interaction – Outcomes for the whole family

Karen says that Intensive Interaction has helped James to make progress in The Fundamentals of Communication. It has also helped her with the acceptance process. Intensive Interaction has connected her to where her child truly is, who he really is, and how wonderful he really is. Stopping and watching him and sharing his world with him has healed their relationship. The bond she had with James prior to his regression has been restored and now his eye contact is fantastic.

“I think the loving connection that Intensive Interaction facilitates, is wonderful. James is really happy and so are we. He may be non-verbal but he communicates all the time and I usually know what he needs and wants because I am tuned into the tiny ways he expresses himself.”

Karen firmly believes that if parents have any early attachment issues of their own, Intensive Interaction can help you work through them. “I think Intensive Interaction should be taught in conjunction with CAMHS. My feeling is that it's just as helpful for parents as it is for the children/adults with ASD. Not having an easy bond with a child, which is what I felt happen when James regressed, is an agonising thing to go through. Intensive Interaction has repaired that for our family in a very gentle loving way. I wish more parents had access to it.”

Intensive Interaction for other families.

I asked why she thought that there aren’t more parents using Intensive Interaction with their children. “I don't know how well it is known,” she replied. “Also, I think parents may be anxious to achieve something with their child. There may be concern that if you're not "working" towards speech, then what are you doing? But Intensive Interaction works because the people we really enjoy communicating with are the people who pay attention to us and who love us dearly. Work on the love and everything else will flow from that.”