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 Another doctor described Chrissy as 'unautistic' because she was social and affectionate - the very opposite of the withdrawn and isolated child in a world of her own that used to be considered 'classic' autism.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

Ineffectively met communication needs are triggers for challenging behaviours. We use communication strategies akin to those suggested by The Challenging Behaviour Foundation and Jill Bradshaw at the Tizard Centre, who both kindly allowed me to use their ideas in my book 'Bringing Up a Challenging Child at Home.'

Positive statements about what a child is going to do are much clearer than telling them what they're not going to do. For example, if we say to Chrissy 'You're not going in the car, she only hears 'Chrissy' and 'car,' and gets distressed when she realises she will have to walk. The message would have been clearer to her if we'd told her what she was going to do: "Chrissy, you're going for a walk."

Abstract concepts are particularly difficult to understand. If I ask Chrissy what she's been doing that day she can't tell me. If I ask her what colour top I'm wearing, particularly if I point to it, she answers me correctly. Her verbal communication is misleading. She is able to understand simple phrases and use learned 'parrot fashion' phrases in context - called social masking.

Much of Chrissy's communication is stream of consciousness observations. She was sitting next to me earlier and looking around the room. "It's a mirror," she observed. Then answered herself with: "It certainly is." She began to list what she saw. "It's a yellow flower and trainers and brown. Home. Brilliant." *Thumbs up sign* She then turned to Ian, my husband, and asked: "You fine Ian?" "Say yes!" *Sign for yes.*

Chrissy can follow simple instructions involving up to two named objects, ie 'put your cup on the table.' Her expressive communication is limited. She can’t tell you if she feels hot, cold, hungry or sad, and will use behaviour rather than words to express her emotional needs. We use a combination of verbal, basic Makaton sign language and symbol aids to help her move through her day. Using communication strategies are crucial to help her to stay calm and they have to be adapted according to her mood. It's draining when she repeats the same question endlessly, and demands a specfic response each time - but fantastically rewarding when she deviates from her learned phrases and makes a meaningful attempt to communicate with us.




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#Special Saturday - How does having a child with additional needs affect your family?

It all started so well...

I asked my youngest daughter, Alex, how she felt her life had been affected by having Chrissy as a sibling. She shrugged & said: 'I've never known any different.' She agreed that it had forced her and her brother to grow up too quickly and take on responsibilities beyond their years. Many instances that illustrate this are in my book 'Bringing Up a Challenging Child at Home.'

I felt guilty about having two more children when Chrissy was so demanding but I had no idea how severe her needs would be - caring for her got more challenging as she grew older & bigger. You expect toddlers to be a handful but Chrissy never grew out of that stage. Living with her extreme, unpredictable, violent mood swings day after day took its toll on everyone. Her siblings had to take second & third place & no child should have to do that. I've had to dig very deep in order to cope, & I've no doubt her siblings & my husband have too.

We’ve always tried to involve her in family activities and do things that typical families do but it's a gamble. You can't predict how she'll react. Many family outings have been cut short due to Chrissy's unpredictable outbursts but we have had some resounding successes, although admittedly not recently.

What happened at the weekend gives a snapshot of how Chrissy’s needs affect family life. She was in a jolly mood & we’d seen none of the major SIB of the past few weeks. She was engaging with activities we did with her, & was very inquisitive and chatty, delighted to have Alex around, who was home from university. On Friday evening, as I sat holding Chrissy's hand, I felt a gentle caress on my thumb. I looked at her in amazement and she was smiling benevolently at me! Chrissy hugs me but she's never caressed me before. On Saturday morning someone called round selling poppies for Remembrance Day. 'Which one would you like?' the seller asked. ‘A chocolate one,' said Chrissy, making us roar with laughter.

The signs were good and it was such a beautiful autumn morning, I decided to take Chrissy to the village shop, about 1/4 mile away. The photo shows Chrissy just after we'd set off. She seemed happy enough walking alongside me but kept asking 'are we having sandwiches for lunch' & swapping which of my hands she held. Halfway there, she got so obsessed by swapping hands, we got stuck. I tried to turn back but it was already too late - she threw herself on the pavement screaming & rubbing her nose until it bled. My stomach was in knots as I feared she'd strip off. I called Ian & he brought the car round to rescue us.

I shouldn't have risked it really but I still get fooled when Chrissy is calm. If I stopped trying to take her out I’d be giving up on her. Episodes like this remind me of the difficulties of balancing family life with Chrissy’s needs when she lived with us - but, as Alex says, we never knew any different.


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#Special Saturday post - Groundhog Day

My life feels like Groundhog Day – we've been here three times in three years. Chrissy’s escalating behaviours, placement not meeting her needs, with the backdrop of the funding dispute. Apart from last Sunday's completely nuts bender, which I think has kept me going through this week, I can still focus on little else. Chrissy's spate of awful impulsive/compulsive self-injurious behaviours (SIB) is continuing. (I'm not going to call them outbursts or meltdowns anymore these have a different, far more intense quality). When I look back at the short phone videos I've been taking to show her doctors, I can't bear to watch or listen for long. She is wretched in them, as if she is being tortured by something outside her control.

These behaviours have fallen into a pattern of going dramatically downhill for several weeks once a year. This year and last there have been meds changes. I can’t remember whether there were the year before but will look into it. How any placement can meet her needs when she's in this state, I don't know. They can only contain her. However, this hospital placement has been promising far more than it delivers for months now & the behaviours have only recently escalated. I don’t attribute them to the environment, which will have remained largely unchanged. As I've said, the Topiramate reduction is likely to be a factor, if not the cause of her unsettled behaviour. However, I would still like her behaviour charts examined to see when she became more unsettled, as a thyroid medication was introduced on 20 September, which correlates with the behaviour changes. I’m told that it’s a tiny dose & wouldn’t cause this sort of problem but, with Chrissy, I always make extra checks as she has such paradoxical & unusual reactions to medications, especially when they are first introduced or changed.

So on Tuesday, Chrissy was at home with my mum and I. It started off ok but, when I was holding her hand, I noticed it was twitching & shaking. She grew increasingly demanding & obsessive about when dinner was ready, what’s for dinner, the computer, DVDs etc. She made her usual ineffectual attempts at spitting & hurting me with slaps on the shoulder. Her obsessions led to three sessions of prolonged, impulsive/compulsive SIB. They were so violent & prolonged I rang the hospital for help – something I’ve never done before. Mum said she hadn’t seen anything this intense for ages, & observed how Chrissy seemed ‘possessed’ by what was happening to her, & wanted to stop but couldn’t.

When Chrissy had recovered she suddenly beamed at me but, even in between outbursts, the smiles were short-lived. She was generally more agitated & demanding than usual. At around 9, Chrissy let me bath her and put her to bed. She then sat silently on the toilet seat in the dark for about 20 minutes, & called me when she was ready to move on. If you intervene before she's ready she will kick off again. She needs to be left alone. I call these her ‘frozen states’ and they often occur between violent SIB. Mum & I were struck by how changeable Chrissy was overall. At one point we asked her what had been the matter; she smiled sweetly & said ‘I had a tantrum’ but wouldn’t be drawn further.

That night, she slept right through until 2pm the following day. We managed to avert any major crises until the car journey home where she became agitated and obsessive again, & kept undoing her seatbelt & trying to climb into the back. The hospital reported that there were further ‘behaviours’ later on and the following day. I also learned that they, too, had seen them occur without any environmental trigger. I was told that while we were away, she had even got out of bed at night, run into other patients' rooms & jumped on top of them - to occupy their beds rather than hurt them. This barging into other people’s rooms is something she's been doing at home. Chrissy then threw & smashed someone’s tv set & radio – first I’d heard of any of this. These problems at night are exactly what happened in her residential placement in West Sussex at the end of 2010. When she’s settled she normally sleeps well.

The compulsive/impulsive nature of Chrissy’s self-harming behaviours has never been examined. One of her psychiatrists put it down to ‘autistic crisis’ and another to ‘attention-seeking!’ Her psychologist put it down to 'jealousy' of another challenging patient! We've never seen any evidence that Chrissy experiences jealousy as such - I can only think it's an unfortunate choice of words. English isn't her doctors' first language. Her previous neurologist wanted her to see a specialist in movement disorders and tics. We’d asked for the referral to go ahead when she was admitted to hospital but, at the time, her psychiatrist felt that the Maudsley (who came out & assessed her) would be able to offer everything she needed. She also said that the medications Chrissy was on would be the ones used for tic or movement disorders.

We can only hope that Chrissy will emerge from this period very soon & that we'll eventually help her to achieve lasting stability again as she did during the last six years of her teens.

A #Special Saturday Post - How Having a Special Needs Child has Changed My Life

I've already written extensively on here, & in my book & parent's perspective chapter about the bigger picture of how having a special needs child has changed my life. Here I'll just give you a snapshot....

As soon as she walked through the door yesterday afternoon Chrissy demanded 'mummy's computer.' She then took over my office & nicked my reading glasses. In the photo she's watching Andy Pandy, which she loves. 'Bye mummy!' she called, no doubt hoping I'd go away so she could hack into my laptop. Left to her own devices, she manages to delete programmes and generally cause cyber mayhem.

Cranky spells peppered Chrissy's stay but, just as I thought she was going to kick off, the mood passed & she became jolly & talkative. Yesterday evening, she sat on the settee, sandwiched between Ian & I, with her catalogues & cookery books spread out around her. She nagged us to 'find the girls' in her catalogues. We found pages of them. 'No GIRLS,' Chrissy pressed on querulously, bending her fingers back & twisting her hands together - a bad sign & an ideal time to try out her new big fat weighted blanket.

It did the trick (but we still don't know what sort of 'girls' she wanted).

'Tuck it my knees,' demanded The Diva (our new nickname for Chrissy). 'Make it square.' Then, when she was swaddled in it up to her chest she ordered us: 'Hold my hands.' Remembering how she likes pressure on the outside of her hands, I gripped one of them tightly.

Peace reigned at last. We even caught the last 10 minutes of Outnumbered, which kept Chrissy amused. She smiles with benign indulgence when we laugh & sometimes joins in - but I suspect she finds the sight of us funnier than the object of our mirth. She's very inquisitive & sometimes appears to be as intrigued by our behaviour as we are by hers.

Today, Chrissy kicked off because I wouldn't let her back on my laptop. She had switched it off & done something to our anti-virus software, which Ian had to reload. I videoed her screaming on the floor with one leg up in the air then replayed it to her after she'd calmed down. She watched, transfixed, but without expression. 'What's Chrissy doing?' I asked her. 'Crying,' she said matter-of-factly. So what did I learn from this exercise? Bugger all but it was worth a try. It might have made her realise how silly it was for a grown woman to have a toddler-like paddy....

'How I'd like my Life to be' by Chrissy - A #Specialsaturday Post

A chance call from the Challenging Behaviour Foundation & a chat with two parents of other adults with complex needs have forced me to think long and hard about the journey we’ve been on with Chrissy over the past few years.

After 27 years of fighting to get Chrissy what I think she needs I’ve become entrenched in trying to sort out failings in the systems designed to support her. Am I failing Chrissy myself because I’m too exhausted and overloaded with information to think clearly anymore? It got me thinking… Have I lost sight of how she would want to live her life?

If she could speak for herself this is what I think she’d say…

Chrissy:
‘I’d like to live in my own home with all my own things around me, including my computer, my DVD’s, my foot spa, multi-coloured hairbands, books and favourite pictures. A garden that I could go and sit in on sunny days would feel very calming. I could blow bubbles and play ball out there too. I’d have my own chair and table outside with a sun umbrella for hot days so I could draw or watch my portable DVD, or sit quietly listening to the birds and looking at flowers with my favourite drink or snack in front of me. It would be fantastic if the garden was big enough for me to ride around in my trike, or close to a safe space where I could ride it with supervision. It musn't be too overlooked because I need my dignity respected when I lose control of my emotions & strip off on the lawn!

My home must be close to my family’s. I stay with them overnight once a week and would love to see them even more often, either at their home or mine for shorter visits. No one else could evict me or take my home away from me - it would be mine for as long as I needed it & furnished with my needs in mind. I wouldn't be forced to move to any more unsuitable places where there's no bath, nothing to do, or a string of strangers to care for me who don't understand my needs.

A wall-chart with removable stick-on symbols to help with my daily routine and planned activities for each day so that I'd have plenty of interesting things to do when I’m feeling up to it would be nice. I'd also like daily home-based activities available as I can’t always get out and about.

A bath with a rail so I could climb in and out more easily is a must. Showers are a definite no-no; the spray on my skin feels horrible. My body reacts to the world around me differently to most people's. Sensations that you don't notice, like a breeze blowing in my face, or sand under my feet feel very uncomfortable but broken bones & missing toenails don't seem to bother me. So you need to keep an eye out for unexplained swellings or hidden injuries. I have problems with balance & spacial awareness, & take my time walking on uneven surfaces, around obstacles or up & down steps. I can’t regulate my own body temperature well but fans on hot days & wearing gloves indoors if my hands are cold help. If I ask to wear a coat, scarf and gloves on a hot summer’s day, indulge me - they won’t stay on for long.

Sometimes I appear to have understood what's said to me but, actually, I may not have done; I need lots of time to process information. I can be helped through difficult times by having pressure applied to the backs of my hands, a cuddle, sitting with my weighted blanket on my lap or a massage. If an outburst threatens, I sometimes respond to tried & tested distraction strategies or basic sign language and symbols to de-escalate my distress. You may find it helpful to try & identify a trigger so it could be avoided or minimised in future. If I lose control, I don’t like other vulnerable learning disabled adults around to witness it & react with their own disgust, fear or anger. I can’t cope with other people’s challenging behaviour around me either. My own problems are more than enough to deal with.

Consistently applied behaviour support approaches are vital for me to remain as stable as possible, along with verbal communication, appropriate symbols and sign language. Any staffing or routine changes must be carefully planned and should only take place if they benefit me, & for no other reason. I need help to dress nicely, take care of my clothes & other possessions, shave my legs, keep my hair untangled and my teeth clean. Like most women, I lap up compliments & love to look nice. I especially need help to ensure that my diet is healthy and that my weight is kept under control because the medicines I'm on make me ravenous & food-obsessed.

On good days, I’d like enough support to go out for a walk, maybe to the local shop, or a drive to a garden centre or park. On bad days, I need space to rest undisturbed in my room, or have a good scream. If I'm hurting myself, I need to be kept as safe as possible, with carefully positioned cushions or sharp edged furniture moved. I'd need a safe area in my home, to which I can be directed or carefully moved with planned physical interventions if necessary as a last resort.

If I say I feel sick or start looking vacant or smacking my lips, look out for an epileptic seizure, & help me sit down somewhere. Even short seizures sometimes wipe me out & leave me confused & disorientated, so I may need a sleep to recover.

The local GP and learning disability team must be fully briefed about my condition and able to respond in emergencies – an appointment several weeks ahead is no good as my condition is very changeable and unpredictable. They'd need to be open-minded about what works for me as I'm extremely sensitive to many medications & they can sometimes induce rare adverse side-effects.

My senses get overloaded by any clutter around me at the table when I’m eating or doing an activity. I’m compelled to have two of just about everything from tissues to dollops of tomato sauce but cutting one slice of toast in half or ripping a tissue in two is fine. If I ask 100 times what’s for dinner, try to be patient & distract me but be firm with me, & please don't overfeed me to sedate me. Oh, just one last piece of advice for now - if you don’t make my bed covers all square and neat around me and turn my pillow (I call it ‘cushion’) over when I ask, I may shout at you and throw a strop.

Yes, I know I'm a diva but I have to be to survive in your world.'

This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. 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://specialsaturday.org/home/"> http://www.facebook.com/SpecialSaturday

#Specialsaturday post - A Spooky Coincidence

Because I’d had a microdiscectomy on Monday, I wondered if it was wise to have Chrissy home this weekend. After learning from her nurses today that she was relatively settled, I decided to give it a go. My younger daughter, Alex, would be here until their step-dad, Ian, came home, so if things kicked off... What I hadn’t bargained for was things kicking off immediately Chrissy arrived. As soon as her nurses brought her home this afternoon, she started asking for dinner - then repeating obsessively that she wanted chips. It escalated too quickly for us to prevent her from taking to the ground. For the 2nd time in weeks she stripped off on our front drive & had a meltdown - the most violent I've seen since Xmas. Her nurses said they'd seen meltdowns like this on the ward since her Topiramate had been reduced. They’d obviously passed us by until now. Spookily, Chrissy had a horrific looking abrasion on her back, exactly where mine is from surgery. As she scraped herself backwards along the gravel on our drive, stones & dirt stuck to the wound. Chrissy continued to thrash about, oblivious to the pain. I marvelled over how she’d never suffered a serious wound infection. The high-intensity outburst must have lasted about an hour in total and I realised, with a sinking heart, that it would be far too ambitious for me to have her home in such an unpredictable state while I was still recovering from surgery. The three of us shielded Chrissy's nakedness from the busy road outside with a blanket & her coat, & waited it out. It faltered for seconds then started full force again complete with foot-biting, hair-pulling, skin pinching & finger twisting. If we got too near we got kicked & hit out at too. “Go away!!!” she shrieked. A painter had been working at the back of our house & had now finished. I asked Alex to tell him to wait before he came round the front to his van. He could hear the ear-splitting screams clearly. "It's my sister - she's autistic," Alex explained. What else could she say? Finally, for no obvious reason, Chrissy stopped, got up & was immediately docile & compliant, chatting away as if nothing had happened. She let us dress her over her dirt-covered body & take her inside to wash her hands. She then hovered excitedly as I packed up some food for her to take back with her. "What was all that about?" Alex asked. "Had a tantrum," Chrissy said matter-of-factly. I then settled her back in the car. As she smiled sweetly at me through the car window, I felt like I'd let her down, & had a little weep in Alex's arms. Later, her nurse called to say that Chrissy was fine, & had remained settled. She also reminded me that, because Chrissy's concept of time is different to ours, she hadn't realised that her home visit had ended before it had begun. Chrissy was just happy that she'd been home to see mummy. This blog post is part of the awareness raising campaign - Special Saturday - raising awareness of people living with special needs around the globe. 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://specialsaturday.org/home/"> http://www.facebook.com/SpecialSaturday

A Strange Genetic Journey

I’ve just had a long conversation on Skype with a pleasant & well-informed Dutch guy whose wife & son carry the same chromosome deletion as Chrissy. He gave me a potted family history that struck a spooky chord. Although Chrissy’s deletion is de novo (maternal origin), our families share more than a coincidental number of characteristics.

The man's wife was born with a squint – the first sign of a possible genetic problem. I was too, & had corrective surgery. Her dad had one leg about 1½-2 inches shorter than the other, like me. Due to investigations into ongoing back problems, I’ve discovered that I also have subtle ‘skeletal abnormalities’ in my spine that are connected to the leg length discrepancy. There are other similarities in our family history that have made me want to explore this further - maybe with a research scientist who has a particular interest in 1q21.1 anomalies.

It makes me wonder how 'de novo' the effects of some of these rare chromosome disorders really are - or am I reading too much into a series of coincidences?