Chrissy, far left, aged 11, with siblings, Jamie, 9 and Alex, 6
Did you read the Daily Mail story 'Can some children simply 'grow out of autism?' http://www.dailymail.co.uk/health/article-2103940/Autism-Can-children-simply-grow-One-mother-tells-sons-life-transformed.html I was irritated and perplexed by it, not least because it wasn't made clear whether Josh, the nine-year old in the story, who was diagnosed at three, still had a diagnosis of autism!
I was interested to see a piece on the NHS Choices website describing the Mail's claim as 'misleading' and offering a 'false impression to the parents of children with autism:' http://www.nhs.uk/news/2012/02February/Pages/children-grow-out-of-autism-claim.aspx
I suspect most cases of a child 'growing out' of autism are in fact initial misdiagnosis, perhaps made too early before the picture becomes clearer. Other overlapping conditions, such as developmental delay, can cause similar symptoms and diagnostic overshadowing. I'm not convinced by the early interventions argument. Although early interventions can improve problems associated with autism they can't cure it. In our experience identifying signs of autism can be open to interpretation and its diagnostic criteria has widened over the years. Is it being diagnosed too readily these days?
Far from growing out of autism, Chrissy appeared to grow into it! Autism was first mentioned by her speech therapist when she was four, who said that although she had very few words that she used 'parrot-fashion' like someone with autism, she used imagination when playing with a doll. (I think she brushed the doll's hair or spoke to it.) Another doctor described Chrissy as 'unautistic' because she was social and affectionate - the very opposite of the withdrawn and isolated child in a world of her own that used to be considered 'classic' autism. In fact, a paediatrician told us: 'Your daughter can't be autistic because autistic children don't speak.'
As I've explained here before, years later when Chrissy was 22, her psychologist diagnosed her with a form of autism classified as 'active but odd,' a diagnosis confirmed by Lorna Wing, MD, Psychiatric Consultant at the National Autistic Society, who checked the psychologist's extensive report. In 2010, a consultant psychiatrist from The Maudsley Hopsital's Autism Assessment Clinic confirmed the presence of autism from an early age after reviewing old videos of Chrissy. He noted her odd postures and facial expressions, and how she flapped her hands in front of her face even at six.
Looking back, Chrissy's autistic traits have waxed and waned over the years. When she was little she often appeared to ignore us when we spoke to her, but we put it down to her severe glue ear, then everything was attributed to her developmental delay. She's always had obsessive/compulsive traits - lots of verbal repetition and switching lights on and off - but taken alone they didn't signify an autism spectrum disorder. Her severe outbursts weren't triggered by changes in routine or anything else that seemed particularly autistic, but her problems with small daily transitions appeared to get worse as she grew older.
Around the time the photo on here was taken, she was going through a phase of turning everything round the wrong way and upside down in her bedroom but that's long since passed. Her over-friendliness has confused the picture in the past but it's now on the wide spectrum of socially inappropriate behaviour that people with autism display. I remember watching Rain Man for the first time back in the eighties when it first came out. I enjoyed the film then but didn't associate Raymond's problems with Chrissy's but each time I've seen it since the parallels are so obvious I keep gasping: 'Oh my God - that's Chrissy!'
These days, Chrissy has frequent spells of very autistic jumping up and down, flapping and screeching but not all the time thank God! Maybe some of these behaviours were always there but less noticeable in a small person but I do think Chrissy is less able to adapt to her environment than when she was little. She was more flexible and reslient then. Maybe she had to be because we didn't know what was wrong and expected her to fit in with the rest of the family. As she grew bigger the tables slowly turned and she either grew into autism or we were no longer able to resist its awesome power!
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Thank you for visiting my blog. These are stories of the unique issues faced by people with learning disabilities and their families, inspired by my experiences of parenting Chrissy, who was diagnosed with the rare chromosome disorder, 1q21.1 microdeletion, in her twenties. If you're wondering if counselling could help you with the challenges that you face in parenting someone with additional needs, contact me: info@janealcockcounselling.co.uk
Showing posts with label behavioural interventions. Show all posts
Showing posts with label behavioural interventions. Show all posts
Friday, 24 February 2012
Friday, 20 January 2012
Person Centred Planning
December 2011: Note rolled up sleeves - one of Chrissy's rituals
Person centred planning (PCP) is a way to support people with learning disabilities to plan how they would like to live their life as fully & independently as possible. Anyone with a learning disability can have a PCP, even if their communication is limited, as PCP is done in consultation with people who love them and know them well.
Chrissy has been in a therapeutic unit for two years and, although she's not yet ready to move on, we need to start planning her future now. The Challenging Behaviour Foundation advised that this can take 12-18 months for someone with such complex needs.
A PCP professional visited me on Wednesday and showed me an example PCP. It included gems such as 'When I sing Bohemian Rapsody watch out. I'm not singing happily - it's a sign that I'm about to lose control and I may throw something at you!'
With Chrissy, I follow my instincts, and take so many of her quirks & rituals for granted that it's difficult to convey her support needs to someone else. However, seeing the colourful detail in the example opened the flood gates. I found myself able to take the PCP professional step-by-step through Chrissy's daily routines. I explained that when Chrissy comes downstairs for breakfast she must have the larder and kitchen doors shut, lights switched on, the area around her chair cleared of any objects that she deems shouldn't be there, her two favourite drinks with two straws, a carrier bag with handles tied in a bow containing her chocolate mousse and a banana......
After all that and more, she will only eat her egg on toast, cut up, with two splodges of tomato sauce, when she's good and ready, usually when it's stone cold!
Explaining the detail of Chrissy's daily routines also helped me to gain more insights into her support needs, which I can pass on to professional carers. For example, I instinctively know when to make myself 'invisible' for Chrissy to adjust to transitions and self-calm. It may mean removing myself from view and watching silently from a safe distance, or simply avoiding eye contact and using minimal communication. When Chrissy arrives for her weekly visits home, I try to get her coat off and settle her into my routine, but the penny's dropped that she needs initial time to herself to wander freely from room to room to adjust to her new territory. She will eventually approach me and say something like: 'Mummy, I want to go on my computer.'
PCP reminded me how important carefully managed approaches are to support Chrissy effectively. The daily management aspects of her needs should be sufficiently met in a single service unit close to her family with a team of carers that know her well - but there are other considerations. Key is the proximity, skill and responsiveness of a multi-disciplinary clinical team. Failings in this area contributed to the breakdown of two residential placements, which caused her untold trauma. When it comes to 'what next?' for Chrissy, we must get it right this time.
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Person centred planning (PCP) is a way to support people with learning disabilities to plan how they would like to live their life as fully & independently as possible. Anyone with a learning disability can have a PCP, even if their communication is limited, as PCP is done in consultation with people who love them and know them well.
Chrissy has been in a therapeutic unit for two years and, although she's not yet ready to move on, we need to start planning her future now. The Challenging Behaviour Foundation advised that this can take 12-18 months for someone with such complex needs.
A PCP professional visited me on Wednesday and showed me an example PCP. It included gems such as 'When I sing Bohemian Rapsody watch out. I'm not singing happily - it's a sign that I'm about to lose control and I may throw something at you!'
With Chrissy, I follow my instincts, and take so many of her quirks & rituals for granted that it's difficult to convey her support needs to someone else. However, seeing the colourful detail in the example opened the flood gates. I found myself able to take the PCP professional step-by-step through Chrissy's daily routines. I explained that when Chrissy comes downstairs for breakfast she must have the larder and kitchen doors shut, lights switched on, the area around her chair cleared of any objects that she deems shouldn't be there, her two favourite drinks with two straws, a carrier bag with handles tied in a bow containing her chocolate mousse and a banana......
After all that and more, she will only eat her egg on toast, cut up, with two splodges of tomato sauce, when she's good and ready, usually when it's stone cold!
Explaining the detail of Chrissy's daily routines also helped me to gain more insights into her support needs, which I can pass on to professional carers. For example, I instinctively know when to make myself 'invisible' for Chrissy to adjust to transitions and self-calm. It may mean removing myself from view and watching silently from a safe distance, or simply avoiding eye contact and using minimal communication. When Chrissy arrives for her weekly visits home, I try to get her coat off and settle her into my routine, but the penny's dropped that she needs initial time to herself to wander freely from room to room to adjust to her new territory. She will eventually approach me and say something like: 'Mummy, I want to go on my computer.'
PCP reminded me how important carefully managed approaches are to support Chrissy effectively. The daily management aspects of her needs should be sufficiently met in a single service unit close to her family with a team of carers that know her well - but there are other considerations. Key is the proximity, skill and responsiveness of a multi-disciplinary clinical team. Failings in this area contributed to the breakdown of two residential placements, which caused her untold trauma. When it comes to 'what next?' for Chrissy, we must get it right this time.
Please join the cause by joining the facebook page - http://www.facebook.com/SpecialSaturday
Following on twitter - @Specialsat and retweeting hashtag - #specialsaturday
Reading and following the Special Saturday Blog - http://specialsaturdayhttp://www.blogger.com/img/blank.gif.org/home/
Subscribe to:
Posts (Atom)

