ATT has started to compile a series of video testimonials to share with other parents and professionals the outcomes of a dietary and nutritional intervention. We are covering all age ranges and different types of interventions.
Please check other testimonials in this section here.
At ATT we hear constantly how simple interventions help children with autism feel better, interact more, start communicating, sleep better and so forth. We have decided to collect these testimonies by video recording. Here is a dad reporting of the outcomes of a simple gluten-free casein- free diet, no other intervention in place yet. What he says is just what we hear constantly in approximately 80% of the children seen here. And it’s only one first step with many other potential interventions to follow. Bottom line: a lot can be done to help these children and it is our focus to ensure that parents will have access to reliable and trustworthy information to guide them to make the best possible choices for ther children.
It’s always good to hear directly of the experiences of other parents and of their children’s progress. We are all faced with similar issues in having an autistic child, and have much we can learn from each other, from every fight, despair, victory and struggle. I thought it was time to update you on our personal circumstances, because a number of important developments have taken place, ones which might be helpful for you to know about for the future.
Our children are growing up and becoming adults, even if we can’t quite believe it. In our eyes they remain so vulnerable and child-like. Even those considered to be high functioning, who have been diagnosed as having Asperger’s Syndrome, are potentially at risk of having insufficient support, inadequate emotional protection and restricted opportunities. And there are many potentially significant risks for those who don’t receive adequate support. The stories abound. So, how can we best help our children manage this transition to adulthood?
As parents, we are advised that every transition for children is difficult. We heard this for the first time when our children left nursery to begin primary school. Can you remember how scary that was? And then, when they started secondary school, wasn’t it even scarier still, as the complexity of their social world and their need for independence, better judgment and self-help skills increased? The transition I have recently faced, as my son reached 16, was for him to be legally categorised as an adult. There are, of course, still further major transitions to come, with the one we all fear the most being the one that we will not be able to witness. I don’t intend to make this piece depressing: I would like it to be constructive, because, in fact, we can change our children’s lives for the better. I think we are lucky to live in the UK, where there are some support mechanisms available, even if it can require considerable effort to access them.
Lloyd’s transition to adulthood was initiated by our school head teacher and I am most grateful to her for pointing us in the right direction. We were referred to the social service transition team which provided an assessment of our needs, both my son’s and our family’s. This assessment resulted in some funding being made available. I could have used this funding to request a placement for Lloyd somewhere, but I didn’t consider this to be a suitable option, at least for the moment, mainly because he is too unwell physically. Lloyd has Lyme Disease, which was only diagnosed recently and has therefore only started to be addressed with the support of the ATT. The consequences of him having untreated Lyme Disease, almost certainly contracted at a very early age, have been devastating. We have witnessed a worsening of his epilepsy, chronic fatigue, motor, social and communication skills, without being able to significantly halt the regression until treatment began. I will update you on this at some stage in a separate communication, but for those who are interested, you can follow our story here.
The funding package provided by the social work department covers 30 hours a week of 1:1 support from a team of carers employed by Autism Initiatives. This is a UK-wide charity with an excellent track record for the provision of support services to the over 16s. The staff are knowledgeable about autism and epilepsy, and are dynamic, enthusiastic and young. They are open to learning, to differences in individuals, and are non- judgmental. Just what we need. The funding also covers an extra 20 hours a week of support (coming from respite care and care at home funding pockets). We have put this towards employing our own ABA tutors with the help of an organisation called the Lothian Centre for Inclusive Living (LCiL). This organisation provides assistance with payroll with me effectively being an employer. Our tutors are therefore classified as staff who pay income tax, (which they can reclaim, depending on their financial situation). There is cover for holidays and sick leave, which I think in general is better for them. This package is available for 48 weeks of the year. LCiL also provides guidance in drawing up a work contract which covers insurance, time sheets and other employment aspects, for every staff member. The funding is made available by Direct Payment. I have a bank account into which the money is paid in instalments throughout the year. I also have a card for this account which I can use to pay all agreed providers and staff on a monthly basis.
On a separate issue, I also sought legal support to become my son’s welfare and financial guardian. This was granted by the courts when he turned 16. I received some support from Legal Aid for this process, which was conducted by a firm of solicitors who routinely deal with such applications.
The great advantage of these new developments is that we now have the flexibility to provide what Lloyd needs. We are able to cover all relevant areas: health, education (academic), self-help, independence, communication, leisure, physical etc, each at an appropriate level. Our entire programme continues to be supervised by 2 ABA consultants, one local lead therapist who shadows and trains staff as required and one who supervises the programme every 2 months, and who has an excellent knowledge of anything we might encounter or need. In total we have 10 staff in our team.
The majority of our curriculum is iPad-based. We use it to record data, activities, progress, any problems, and to communicate with the entire team (e-mails of notes, performance, a log of activities, a diary, videos etc). The iPad also contains all the information required for various teaching procedures, care plans, epilepsy management, information about my son, emergency contacts, safety procedures. As far as Lloyd is concerned, he can use it for entertainment (music, videos, internet, fun activities), to assist him in planning activities (photos, schedule of activities, prompts, visual cues, social stories), and for learning. The iPad is suitable for any type of learning. I should say that using an iPad doesn’t mean that we have become impersonal, using it as a substitute for interaction with people. However, it is so effective in teaching the pre-requisite skills for socialising, so visual and motivating, and it requires only minimal motor skills. I therefore really believe that this tool is essential to our programme, and will become increasingly used by others with disabilities, especially autism. I have to remember to back up the iPad regularly though!
On the financial side, we have of course received additional support from the government, through the disability living allowance (DLA). Through the motability scheme, we have access to a car which every staff member is insured to use. This allows Lloyd to go to the gym, to climb, to swim, to use a sauna, as well as to attend other social groups. The reality is that he isn’t stuck at home. If he’s unwell, of course, he can stay at home to sleep and recover. This is a new luxury. I use the word ‘luxury’, but really this is nothing more than every family like us deserves to have. If we’d had this support earlier, I believe we would have been less affected by Lloyd’s developmental issues than we currently are.
I am often asked, what next? My answer to this is that right now I can only deal with the present. For the first time, we have the opportunity to give Lloyd a fully supported, flexible, stimulating and effective structure, for 50 hours a week. This will allow us the opportunity to address his health issues which we have the means and knowledge to do. Where this will lead him in five years’ time, I don’t know. But I do hope it will be a place where he won’t be prone to seizures, where he will be safe and supported in his choices and his emotional needs, and included in a supportive community. Access to all life-long learning is a right we should all request for our children.
Perhaps things will get easier as we continue to progress. It looks that way at the moment. So, fingers crossed!
Please feel free to comment on this post on our web site. Our collective knowledge is huge: together we are stronger!
‘From the day my son was born he had health problems. He caught every illness going and took twice as long to get over them than any other kid, he had constant and recurrent fevers, he never had a normal bowel movement; alternating between diarrhoea and constipation, and he never slept through the night. He would have terrible screaming fits every night that sounded like cries of pain. Of course, like any mother I took all my concerns to the doctors several times but was always fobbed off with the explanation that ‘it was normal’. When I started my son on solid food at six months he projectile vomited everything out. This went on for weeks. I took myself off to the doctors only to be told, yet again, that this was ‘normal’ for some babies. I was really beginning to hate that word! I started to notice other issues with my son and decided to take matters into my own hands, since none of the professionals seemed to think there was cause for concern I figured it was up to me. I soon realised that my son had autism but I didn’t feel despair at this realisation when I kept researching. I read so much information and several books about biomedical interventions and I was overjoyed. The things I read these parents and professionals say described my son’s problems exactly. When I finally managed to get in to see a specialist I was so excited to tell her all that I had learnt and see what she would start implementing to help my son. To my absolute disbelief she had no interest in listening to any of what I had learnt and refused to even consider implementing any biomedical treatments. Once again I realised it was going to be up to me. I immediately started researching on-line again for doctors specialising in biomedical treatments and that is when I found Dr. Lorene Amet and the Autism Treatment Trust. With ATT all my concerns and suggestions were taken into consideration and I was instructed on how to start making some small changes in my son’s life. The first thing we did was switch him onto a Gluten-free Casein-free diet. Within one week the difference in my son was amazing. He was no longer waking up at night screaming, he was calmer and much more present. We next started him on B12 shots, which is a night I will never forget. Up until this point my son had never shown me any affection but within 20 minutes of his first shot he was hugging me and holding my face and smiling at me. I couldn’t wait to do more! After several tests and a consultation at the clinic a full treatment plan was put together. Over the past seven months as we have been implementing the treatments my son has become a new child. The difference in him is nothing short of a miracle. His autistic tendencies have decreased, his self injurious behaviour has almost vanished, he sleeps through the night, his belly is no longer constantly bloated and swollen, he has eye contact now and is a very loving and affectionate little boy. Before coming to ATT my son had unexplained rashes and spots on his body, he constantly had red cheeks and would grind his teeth incessantly, he would look at everything out of the corner of his eye instead of looking right at you or an object, he would spin and flap and obsessively play with one item inappropriately for hours at a time; all these things are gone now. Now my son is comfortable enough and healthy enough to be able to learn and we have recently started him on an ABA programme. He is doing very well with his therapy and I cannot wait to see what the future holds. We still have a long way to go but thanks to the wonderful people at the Autism Treatment Trust we now have hope that the future will be bright. I give thanks every day for the work that they are doing and for helping my son to feel well for the first time in his life.’