Treating Archie’s Autism
- Autism charity calls for better medical care for people “left in pain or to die prematurely”
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- Treating Autism Roadshow coming to Crawley, Sussex
- Fight to treat autism-related illnesses
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It took me by surprise and in that split second a longing so intense I couldn’t breathe, let alone think, surged through my body. A simple word ‘Mummy’, but one charged with huge meaning and valued so highly. I felt helpless, inept. Did my son even know I was his mummy?
What a difference a year makes…..
Archie’s story began when he reluctantly entered the world in 2003 by Urgent Caesarean Section after a major tussle with forceps. He was a good colour, healthy weight with high Apgar scores and a fantastic set of lungs. The pregnancy, my second, had been pretty unremarkable apart from an inner ear infection, and post birth surgery infection, both treated with antibiotics. His two year old sister was delighted with her new brother (born on her second birthday!), and life sped on. Baby Archie was healthy and aware of his surroundings – he fed well, ate well and slept well, albeit at pretty inconvenient times for the rest of us!
Breastfeeding lasted for 7 months until I lost a large filling and decided it would be better to use formula while I had dental treatment. Weaning started at around 5 months. He developed well and reached all his milestones ahead of time – he walked at just 9 months and was very active and curious about the world around him. He began to talk – names like ‘dada’ and ‘nana’ – he also began to wave and say ‘bye bye’. He was a delightful, active, adventurous baby with a great infectious chuckle.
Overall, our baby boy was strong and vibrant; he didn’t catch many colds and bugs. However, if something did take hold, he had difficulty shaking it off and consequently both an ear infection and a chest infection during his first eighteen months took antibiotics to clear.
We agonised over the MMR – trying to make sense of all the conflicting reports. When the time came we were rushed along as there was a measles scare (which never materialised). We believed it was important for ‘healthy’ children to be vaccinated to protect the ‘less healthy’ children in the community, so we went ahead. Archie didn’t have an extreme reaction to the MMR apart from the temperature and grumpiness afterwards which we were told to expect. However, his behaviour did change during the time just after. As time went on, we began to notice how excited he got at certain parts of TV programmes, mainly the credits – he would bounce up and down with excitement, flapping his arms – we didn’t know about autistic traits yet and thought his ‘Tigger’ish qualities cute. We did think he might have problems with hearing as he seemed unable to hear us talk to him, but it didn’t add up as he was able to hear a particular TV theme tune come on, even if he was in the garden. We noticed he had lost the speech so far gained, and apart from a few noises when excited, there was no sign of any new speech emerging.
We asked for hearing assessments, which all showed he had no problems? It was on Archie’s second birthday when, after surfing the internet, we started to suspect autism. During his party, after he had avoided his party, ignored his presents, ran away from the bouncy castle and hidden away from his guests, we decided we should get him to a Specialist. We hoped they would put our minds at rest. We spoke to other people about our concerns and they reassured us – ‘he’s just a boy – all boys are like that’, ‘Einstein didn’t speak until he was 5’ – we started to doubt ourselves – were we being neurotic?
I started to keep a diary of Archie’s speech and behaviour. One day, out of interest, I let him do what he wished and he repetitively poured sand all afternoon, and then went upstairs to pour water at bath-time. Now we accepted he definitely had ‘autistic traits’, but still, I reasoned – he’d definitely only be a mild case, just a little “eccentric”, we could handle that. Next, Archie’s nursery raised their concerns about his behaviour, and I explained my fears about his development. I made a ‘can do’ of all the things Archie was able to do, in preparation for a meeting with the Area SENCO – this was scary, it made me confront just how bad things had got. I just kept thinking ‘when did he stop clapping?’, ‘when did he stop playing with his toys?’ and felt terrible that skills had slipped away – why hadn’t we noticed earlier? By now we knew he had this mysterious condition called ‘Autism’.
I was losing faith in “the system” and started to research obsessively – I had to DO something – everything I was reading was saying that early intervention was crucial if Archie was to stand a chance at an independent life, yet appointments were taking forever to get, turning appointments into therapy was taking forever, and people who were supposed to be helping us were telling me to be ‘patient’, telling me I had to have ‘reasonable’ expectations, and responding to me as if I were being completely unreasonable . I bought some books about PECS (the Picture Exchange Communication system) and started taking photos of all Archie’s favourite food and drink items. We started exchanging with chocolate buttons, and very soon he picked up using cards to get what he wanted – a huge percentage of his frustration disappeared as soon as he had this option to communicate with us. We tried Makaton signing – but he didn’t respond to it – looking back now, I don’t think he could organise the motor movements and mirroring it required.
I realised I was going to have to reduce my working hours – the lack of childcare options and the amount of extra ‘unpaid’ research work, caring needs and administration, truly left us no option – the loss of my share of income put us in a very difficult situation. I heard about Disabled Living Allowance, but the application process was a nightmare! – We got refused at first and had to collect 16 pages of evidence to prove our son was more difficult to look after than another child of the same age. We were still coming to terms with what was happening and his difficulties were escalating. Now we found ourselves in this situation where we had to spell out all the difficulties we were having in such a negative way – telling nameless, faceless administrators about our son’s pooh-smearing and self-harming. Even making the time to fill in the paperwork was difficult, if I turned my back for a second he ate something he shouldn’t, broke something or started banging his head on the walls and floor. Thankfully we had the internet and the Citizens Advice Bureau to help us but it was the absolute worst part of the early days. After reading ‘The ‘Out of Synch’ child’ we were starting to understand – many of the behaviours Archie was showing were ways of seeking sensory comfort or ‘self-regulating’ his sensory problems. Now we set on a path of giving him some ‘sensory solutions’ – things that were at last helping him to feel calm and safe in the world – a weighted blanket, some cushions to bury himself in, a trampoline, a swing – all simple things that really helped. Also, we started to remove all stimulants from his diet – artificial colours, preservatives, MSG, caffeine, sugar. We were learning and moving forwards, but quietly at night, when it was just me and my thoughts, I still kept hoping I could find a way to ‘solve’ the autism – I still had trouble accepting it as part of Archie, part of our family.
By now I had lots of ideas about ‘what’ to do, and what I really needed was some practical help getting things done. I was becoming overwhelmed with the enormity of it all, working every second of every day, as well as most of every night. Archie continued to wake frequently, taking hours to settle each time. In between we were trying to make sure his sister – at 5 years old and just starting school – was getting the attention and care she deserved. This proved a guilt-filled challenge – we still had to watch Archie every second of the day, trying to guess and anticipate his needs and keep him out of danger. Even the school run was really complex – needing a travel schedule, snacks and a rigid routine to get Archie in and out of the house and the car without making his sister late. We were continually chasing up appointments, looking for help, researching to try and find the right answers and make sense of all the conflicting advice. Trying to engage Archie, give him a consistent environment, and keep him away from the telly for reasonable periods in the day. The follow-up appointment with the Paediatrician arrived when he was 2 years and nine months – the diagnosis was confirmed. When we looked at all the charts and measures of autism he was firmly at the severe end of the spectrum whichever way we looked at it. We tried to find out what this meant for our family and found grim expectations. In a nutshell: Autism is an untreatable lifelong disability, you will ‘cope’ with this for as long as you can before your child is taken into residential care, statistically you are likely to end up divorced, in poverty, siblings in the family are likely to suffer tremendously. We made a simple decision. We couldn’t and wouldn’t accept that as the future for our family. We decided instead to follow the advice of those with a more positive outlook. Luckily for us, our paths crossed with Mandi Rodwell, and ‘Treating Autism’, whose newsletter put us in touch with ‘Growing Minds US’. From that point on, life began to improve.
Through reading information on the TA website, I started to recognise similarities straight away with the stories of others. Archie always had strong food preferences, refusing savoury foods unless sweet was mixed in. He suffered with alternating constipation or diarrhoea. As he grew older he became more and more fussy about his food, and if it wasn’t presented in a certain way on a certain plate he just wouldn’t eat. He developed a marked preference for pale and crispy foods and everything he ate was first tested with a long and complex procedure – first touching, then mashing through his fingers, then touching to his lip, then touching with his tongue – if it passed all these ‘tests’ then he would eat it. We introduced omega oils and probiotics, which seemed the simplest place to start. After reading about the gluten and casein free diet on the ARI website, and talking to a very humble and amazing Paul Shattock, we immediately removed gluten from Archie’s diet. The results were amazing and within just a few weeks he went from having literally never sat still during the day to sitting for up to 15 minutes! Long enough to eat a meal! At the table! His bowel movements became more regular, he became calmer – and was less uncomfortable during the night. We were finally starting to make him feel better! Later we removed dairy and his sensory issues seemed to improve – still there, but not getting in the way for him so much. We moved out of constant ‘firefighting’ and started getting somewhere near family life again. We were occasionally getting as much as 5 hours sleep and were grateful for it!
Over time we added vitamins and minerals daily and, after reading about magnesium, started adding Epsom salts to his bathwater – all seemed to be good, sleep at night seemed again to improve slightly. After reading about enzymes we began to give him a broad spectrum digestive enzyme to help with the ‘problem foods’ that we still were having trouble working out.
Having introduced so much in a short time, the results were getting very confused. We knew he was improving massively, but were not totally sure which things were working! I looked for a nutritionist who could access a Comprehensive Digestive Stool Analysis (CDSA) and a hair mineral analysis for us. After that, based on the test results, we put a programme in place for 12 weeks to tailor his supplements more specifically. We had a bit of a wobble here – some of the supplements were not agreeing with him, and looking into it started to take us into researching medical terms that were way out of the scope of two GCSE’s in science! We found Lorene Amet at the Autism Treatment Trust, and, with some assistance from Caudwell Childrens Charity, have been working with her ever since to get an even better picture of what is happening with Archie’s digestion and metabolism.
It’s not only biomedical that we have to be thankful for, our time with Growing Minds Autism Programs in the USA – firstly through distance learning and then, after some fundraising, on a trip to Florida in 2008 – has been quite simply amazing.
It would not have been possible for us to make the progress we have recently if Archie had not able to sit and focus on activities, if he had been in too much pain to take part. Sometimes people ask us – was it the diet, the supplements, the learning program or something else that helped most? It was all of it, every bit – just as we believe his condition was caused by a number of factors, we believe it has needed a number of solutions in a combined approach to help change the course of his development.
So where are we now? Archie will be 6 by the time you read this. Imagine my delight when recently he ran to me, throwing himself into my lap and tearing of his sock and shoe “Mummy! Foot! Daddy did it!” Was a Mother ever more delighted that her husband had stepped on her son’s foot – I doubt it! In the last few minutes he has run past me shouting “Ruby, chase me!” – his sister in hot pursuit behind. His laugh – the infectious chuckle has returned. He is gaining courage with new foods, happier to investigate now that he isn’t getting terrible stomach ache after eating. He is speaking more with every week that passes, we’ve been able to establish that he can read, he uses the computer unaided to find Tommy Zoom or a Cbeebies game. He is calm and connected. His eye contact continues to improve. He goes to bed every night, even if he doesn’t go to sleep! He is out of nappies. We’ve even been able to take him on a long plane journey. Yes, we still have challenges, and autism is still very much a part of our family life, the road ahead is still uncertain. But life has improved beyond expectation – and something I hardly dared to dream of just last year has been totally surpassed. I wish you good luck on your journey too.
By Archie’s MummyVisit this page for more Parents’ Stories of Hope
Our charity is run by parents and we value parent experience. As such, we encourage parents to share their stories. Parent experience cannot be viewed in any way as medical or therapeutic advice. Each parent story is just that: one account as shared by one family. Your family’s experience may be completely unrelated.