Friday, 24 February 2012

Can children Grow out of Autism?

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 Another doctor described Chrissy as 'unautistic' because she was social and affectionate - the very opposite of the withdrawn and isolated child in a world of her own that used to be considered 'classic' autism.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!


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Saturday, 18 February 2012

Chrissy's very Special Nana

Chrissy, her nana & little sister, Alex

You may remember I posted a photo of Chrissy with her nana on here a couple of weeks ago. Although mum's 80, she thinks nothing of hopping into her car & driving down to us in Hampshire from her Hemel Hempstead home. How we took her visits for granted! I call her my Fairy Godmother because she lavishes TLC on our garden and sprinkles fairy dust around our home. She sees everything through an artist's eye - she made us exquisitely detailed cross-stitch pictures that represent miniatures of our kitchen & bathroom, & at Christmas, she adds special touches like decorating our old oak stairs with holly and ribbon as only she can. She tries to open our eyes to the beauty she finds in everyday things that we don't notice - like a perfect bloom in our garden or one of our cats lit by a shaft of sunlight. She lives for her family, with gardening coming a close second, and she gives the best advice without interfering or being overbearing. I couldn't have managed without her support during Chrissy's early years. Mum, understandably, hasn't been confident for a long time about managing Chrissy on her own, but often used to pick up the slack in other ways by having Chrissy's siblings during hospital dashes or other family crises. Mum's moral support and sympathetic ear has been invaluable during the recent challenges we've faced with Chrissy. She has a lively interest in everything that goes on in the world and we’re so proud of her for taking the plunge and learning to use a laptop. She has even got herself a Facebook profile to keep up with her seven grandchildren! She acts like someone far younger than her years - but we took her fitness for granted, oblivious to the fact that inside her body a silent killer was at work.

Several years ago she had stents fitted to open up blocked coronary arteries. Problem solved we thought – but, on and off, she continued to get chest pains. All tests were clear until two weeks ago when mum was rushed into hospital after suffering prolonged chest pains. A blood test showed she'd had a mild heart attack and further tests revealed that she needed urgent life-saving heart bypass surgery followed by a further op to unblock a narrowed artery in her neck. Our fears grew as the number of complications rose. As anyone who's had a seriously ill dearly-loved family member knows, you’re on an emotional roller-coaster and feel utterly helpless. Like many mums of disabled children, I've become a medical expert on Chrissy’s health issues but I don't know the first thing about heart problems like mum's. It's been another steep learning curve.

Mum had the bypass last week and, thank God, all went according to plan. Then on Monday we had a major scare that resulted in my brother, sister and I rushing to her bedside, thinking she’d breathed her last. Her medication was adjusted and we're now happy that she's on the road to recovery. Thanks to her surgeon's skill, it looks like we'll have several more precious years with her, during which she'll be thoroughly spoilt!

Chrissy has no idea that her nana’s ill. If she visited her in hospital she may, due to the context, fleetingly comprehend the situation on a superficial level. Then she would learn the rhetoric 'nana's sick,' the same way she learnt 'daddy's in heaven' when she asked about her dad after his death. In any case, a hospital visit is out of the question. Mum and I giggled at the thought of the cardiac ward carnage she'd create. All those tubes, dials, bleeps and flashing lights to play with!

Mum has managed to smile even during the darkest moments of her ordeal but then irreverent humour abounds in our family. Like the time several years ago when Chrissy went through her 'Tourette phase.' (#Specialsaturday followers may recognise this story so apologies to them for repeating it!) Alex had broken her arm, & mum and I had no choice but to take Chrissy with us to A & E as there was no one else to look after her. Once there, Chrissy kept shouting ''@uck it!' at the top of her voice. At one point, mum & I had to walk with her past a crowded waiting area. We chivvied her along, praying she wouldn't say it - but just as we reached the last row of seated people, she let rip, & we collapsed with helpless laughter. Chrissy & hospitals don't mix. She will be none the wiser about her nana's close call - but sometimes ignorance is bliss.



I am a SWAN UK (Syndromes without a Name) blogger
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Friday, 3 February 2012

How we really feel about our Children's Genetic Blips

I belong to a Facebook group for families affected by rare chromosome disorders. We mums discuss our children’s medical issues matter-of-factly and share our frustrations about fighting for services - but only occasionally do we dig deeper into our own feelings of sorrow and loss. Then a mum asked how we'd reacted when we found out about our child’s condition. It triggered an avalanche of emotion, so eloquently expressed that I was moved to ask if I could share some of the comments on here. There’s rage, despair and brutal honesty but shining through like a beacon of hope is our love for and devotion to our Unique children.

Jenny....We only found out about Steven's deletion in 2010 just before he turned 30....In a way it was a relief to finally have an answer and since being told what had caused his problems I have found out more about my son then I ever thought possible; it has also helped me to understand him better. My hubby’s approach was: "oh well at least now we know" but I had to find out as much as I could and in fact I'm still finding things out. Guilt was my main feeling for 30 years. There are days even now, 31 years later, when I hate what our lives have become. I love Steven to bits and would give up my life for him but there are times when I hate his condition. It does not make you a bad person for feeling like this – I think if people were honest most of us feel like this at some time or other. It doesn’t mean we love our kids any less. Some of us just struggle more than others....

Anon....12 years passed after our first daughter was born before my husband and/or I stopped shedding silent tears when we saw a child walking hand-in-hand with its parents. We could not adore our own any more than we do but grief for the loss of their mobility, or conversation, or demonstrations of reciprocated love, runs very deep. On the outside, people saw us as strong and capable - role models for other parents. Human beings are truly remarkable. Yep, there have been times when I have heard my daughter talking to me and seen the girls running around and at the moment of waking, I am full of joy. You don't realise how things have affected you 99.9999% of the time...

Jennifer....We found out about 1.5 years ago and I'm still as upset as the day I was told. Many days I am unsure that I can live the rest of my life with this. My husband is the strong one who is handling it well. I know people are all upbeat about their situations and many say they wouldn't change anything. Hate me if you want, but hell yeah I'd change it. This is not fair for Brooke, for her brother or our family. I am really bitter, angry, and want to talk to whoever is in charge to get this fixed. However it's not an issue that can be fixed. A friend of mine adopted two handicapped children from China and he told me it's easier for him because he knew what he was getting into. This was sprung on us and I for one am not happy. Of course I love Brooke, but it's something that I knew I couldn't handle. I'm one of those horrible people who would see a child with Down's and say a thank you to God that we didn't have that. I'm not strong enough to deal with it. Sorry to be such a downer. I'm sure I'll get a lot of replies saying that I need to see the positive side. Yeah, I've tried that. It still has changed our lives in a way that we didn't ask for, want, or can handle. I know I’m a bad person for saying that but that's how it's affected me. I'm sure we all go through the stages of grieving and I'm stuck in the anger stage. I love Brooke to pieces but one of my fears is that she will remain a toddler forever. Thank God I have my husband. I for sure couldn't do it alone....

Leah....We got Ty's dx sometime in his first year. 10 years on and I am still angry at what we have to go through, what I have lost and what I will likely continue to lose as time goes on. I know I have gained so much as well…..This week I hate this life and cry at the drop of a hat. Next week I will be on the front lines fighting bitterly for my son’s rights..... My ex-husband...well...he's an ex...that should tell you a bit about how he handled it. He manages to accept my decrees when I throw one down and tell him he will be doing such-and-such for our son. He doesn't like most of them and most of the time I have to battle him too in order to get him to understand why they are needed.
I cried when they told me 10 years ago and I still cry on a regular basis because I am exhausted and frustrated, and tired of fighting for EVERYTHING, and tired of watching my son struggle and not knowing how to help him. He is the light of my life, the very air in my lungs...I can't honestly imagine loving anything as much as I love my little man. I would give it all up to have him healthy, to have him "normal", to have him "acceptable" in society's eyes. I would give EVERYTHING up for my son to be whole. It probably seems odd to hear these things. Most people tell you something bad and then coat it in the sugary sweetness of how wonderful it can be to be a part of these kiddos’ lives. And sure...there are GREAT moments...but I wish someone had been honest with me...maybe I wouldn't have felt like such a horrible mom and a horrible person for so long thinking that I was the only one who HATED that I was dealt this card…..There are truly SUPERMOMs out there that take it all head on...and then there are those who take it head on because we have no other choice...someone we love needs us and we do what we have to, even though we may not like it. It is scary enough just getting a dx of anything other than "Your child is beautiful and healthy!" …..Even those of us with older children are still scared to death of the dx we were handed, what it means, what we do with it, what is coming. The hard part...no one really knows...

Jen....We found out last April that our daughter (22 months) had a chromosome disorder. We were devastated. She was developmentally delayed but we mistakenly thought that meant she would "catch up." My husband and I went through different grief periods with him refusing to open up about it and me needing to. I won out of course and we worked through it together. I thought I was losing my mind. What compounded our grief was finding out that our three year old had autism three weeks later. He had been speech delayed but we were told by Early Intervention that it was just a speech issue. They were wrong. To say my husband and I were then angry at God and everyone else is an understatement. It has shaken to the core my basic beliefs about everything. I hate to add even more but then three months later (this August) my healthy 15-year old collapsed and had a grand mal seizure, and has since had another and was diagnosed with a seizure disorder. Now I’m in survival mode day to day. I have a hard time even relating to people with "typical" children. Not because I don't have any; I have nine children. I was blindsided by the issues of my kids and am on antidepressants. I was going to school to finish my degree and thought our life was going a certain way and it took a long time to accept that I may have three kids living with me as adults. Jennifer, I feel for you, every one of us can understand where you are coming from. Sometimes I can't even imagine what kind of creator could let people go through the kind of heartache that we all go through with these kids. The challenges my kids face have opened up a whole new dimension in my life that most people don't get to go to and I feel very blessed to be able to witness the tiny miracles, such as my baby signing or my autistic son calling me mom. I know people whose biggest worry is when they can get their nails done. I fight bitterness because of the lack of support from both sides of our families but I know better so it makes me almost feel sorry for them. I can't imagine not reaching out to a family member who is going through this....



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