Feedback on Treating Autism 2015

Fedback from our beneficiaries: Treating Autism has literally been a lifeline for our family, providing much needed information to help make our autism kids lives be the best they can be. The conferences are particularly inspiring and informative and have given us direction and a feeling of empowerment and community in what can often feel like a very isolated existence. It helps to give us the strength to keep calm and carry on finding out answers and supporting our fellow autism families. Thank you so much to all the dedicated and amazing people who run TA, you are incredible people.

TA has helped our family more than anything else. Our son faced terrible problems with his bowel and allergies, and attending TA conferences has allowed us access to the information we needed to help him. The new comorbidities pamphlet is also helping doctors and health professionals better understand the emerging science around autism and the need to explore the health challenges our children face. Greater understanding can make a massive difference to our children getting the help they need. TA is doing tremendous work.

Dear Treating Autism, over many years I have been grateful that a charity like yours is there for help and support. The conferences are brilliant, with really good speakers telling us about things we can do to help our ASD children and about what is happening in the world of Autism research. There are also practical sessions that Treating Autism provide at the conferences such as learning about therapies and seminars with therapists whose therapies can make a huge difference to ASD children's lives, for example by increasing their communication abilities. Then there is the whole parent network, which is created by being able to attend the Treating Autism events. As parents we are often isolated and so it's really good to be able to talk to other parents who are having similar problems. Finally when things go horribly wrong, I have been able to contact the team, who have been able to give support and valuable help. Keep up the good work, it is wonderful.

Treating Autism has provided me with valuable support - I know I'm not alone and that I have somewhere to turn. The support groups are WONDERFUL, conference was GREAT and emails are helpful. Facebook groups also helpful! I use the discounts Treating Autism provides every month! I have been given the resources with which to take our arguments for Treatment to local MP, Community Peadiatrician and various GPs. You're doing a great job and I can't think of anything else you could be doing!

Dear Treating Autism, Just to let you know that information you provided had a positive outcome …The introduction of this intervention by our doctor (thanks in great part to information collected and passed on by Treating Autism!) meant that in just five days our child showed a marked improvement in behavioural responses, a reduction in OCD rituals and rigidity, reduction in oral defensiveness enabling new foods to be introduced. Also lately we have seen a reduction in over responsiveness to everyday occurrences including phobias of harmless things i.e. flies, shop freezers. We are now able to take our child on shopping trips, to new activities without elaborate rehearsals and be more spontaneous, including giving them surprises as treats, going to various busy family fun activities and joining in the fun including a birthday party. … It was integral that we were able to evidence validity for this intervention use in our child. That was only possible through the documentation and referencing you provided. This intervention has given the whole family a better quality of life and more social opportunities to help develop our child, giving them the opportunity to just be a child like any other! Thanks and Best Wishes, MA We had no concerns about our son until after his second birthday, when he started with eating problems, digestive and bowel problems, and then sensory and social issues. … I was determined to keep going, and through web searches I found Treating Autism. I read some of the parent stories, and lots of your literature and it was so encouraging. I joined straight away. I cannot express enough just how much Treating Autism has helped me as a parent! Through your literature, suggested reading, documents, parent stories etc, I started my son on a special diet. We also started seeing a professional nutritionist (again, she was suggested to me via Treating Autism links). She diagnosed serious gut issues with my son, and we got him onto a programme of enzymes and supplements. The turn-around for him has been amazing! He is a different child, and I fully believe that he can improve even more. We’ve benefitted greatly from the discounts on supplements, so thank you for that. I attended the one-day conference in London earlier this year (which was promoted through TA) and my Mum and I will be coming to the TA conference in November.

Hearing conference speakers and meeting other parents who believe they can help their kids, instead of just “accepting” has been so empowering! I’ve used some of your Co-morbidities literature with NHS professionals. Our new Gastro Paediatrician has has been very supportive. It’s also been a great help to share these ideas with school, they also have to agree that my son has developed in real leaps and bounds since he started school. The Facebook site has been great. Getting links to the articles you post is really superb. It’s fabulous to read about all the research findings from around the world, and keeps me going on this path. Keep up the fabulous work!!

Without you, the lives of my family would have been so poor.

I have been coming to Treating Autism conferences for the last 3 years and have found these enormously helpful in terms of gathering information and developing a deeper understanding of the health issues for my child with autism.

It is also useful to speak to other parents who may be at a similar stage, even though our children are all so different.

I always read your emails. I have passed on the excellent comorbidities document to my son's educational psychologist and his vb tutors at the time, as well as parents I meet new to the idea of tackling their child's often myriad health problems. I have been home schooling my son since July 2012, and last Summer started taking my son for tuition at a learning consultancy that was recommended by Dr R during a Q&A session at the first Treating Autism conference I ever went to. My son was only able to access this due to the improvements in his health, bringing better functioning in terms of comprehension, attention, compliance and more language. This tuition is now bringing huge benefit in terms of speech, meta-awareness and engagement with others. I have often been asked by parents or worried family members about autism and I always recommend they contact or look up the website for Treating Autism.

TA has provided me with an immense amount of support. When my son was being diagnosed some of the members reached out to me on social media sites and encouraged me to get in touch and learn of ways to help my son. The virtual friendships which developed from this have been so incredible I would be lost without them. I have found myself strongly advocating TA to anyone I meet who is going through the diagnosis period! At a TA conference I saw UK speak about her success with xx. She has since helped both myself and my son and I am so grateful for this.

When E was first diagnosed, he was completely mental. He would smash his head against the tiled kitchen floor, he would bite, scream, hit and scratch himself till he bled. He would smear his faeces around - anywhere, he would spin, hand flap, switch the light on/off on/off, his eating was so picky that he was almost under the paediatrician because he was so small for his age. He was on constant full steam ahead mode and slept so little and made us so tired and desperate… I scoured the web, came across Treating Autism, and was so thankful that I could share ideas with other mums who also thought they could help their children. With a lot of trial and error, my son who is now 8 is beginning to say his first words. He looks you in the eye and tries to engage with you, he no longer bangs his head or tears at his skin… I have felt out of my depth most of the time pushing back my sons health issues, but having treating autism behind me, encouraging me, supporting me so I don't feel like the lone mum... I know without a doubt, that I have transformed his life already. The way he used to bash his head, he would have had brain damage by now. Treating autism have been the bedrock I started to build our new lives on. Thank you guys.

My daughter L was diagnosed with autism at the age of 3. This was a heart breaking time for us, we felt helpless and hopeless, as our GPs and paediatrician offered no hope of a normal life for her. We tried some therapies from what we could find out on internet, but still felt isolated and had a lot of issues to deal with. Then I was lucky enough to come across Treating Autism postings on Facebook, and their website. I found a wealth of information from Treating Autism to be a real and practical help in our fight against this condition. I regularly read Treating Autism posts on Facebook – it is so helpful that someone brings together information from the latest medical research and brings it to my doorstep! I also found some new methods and techniques to combat L’s allergies through Treating Autism postings, which help us a lot.

I also found out about support meetings organised by the London branch of TA and attended a few of those. It was a great relief to find other parents in the same situation as us, and to share experiences and talk about issues that we all face. I found it the best type of support I got in our journey through autism. It gave us strength to carry on fighting this complicated condition and we became good friends with some people we met there. Lilia has made great progress as a result of therapies we implemented, and we are very grateful to Treating Autism on providing the information without which this would not be possible.

The organisation Treating autism has helped me enormously in the past. When you get your child's diagnosis you can be told that there is no future to look forward to for them. Everything appears bleak. Treating Autism completely turns that on its head. It has changed not only my sons life but our whole families life. The conferences give so much information for a parent to start helping bring their child back to full health. The support I have had from fellow parents who attend these conferences is priceless. I have life long friends and a support network that completely understands mine and my sons life. The isolation is awful at times. That never goes away no matter how old your child gets. It comes in waves throughout their life. TA are always there for parents. I know my son would not be the healthy 12 year old that he is today without them and I would not have the support that I do without them. Gratitude and thanks will never be enough for what I feel for TA.

Fedback on our conferences and local events – delegates’ quotes: Thank you so very much for a fantastic conference. You have all worked so very hard. My son will benefit so much.

This conference has been totally amazing as I have learnt loads and been inspired to continue. Well done to Team TA. They are all a testament to the power and wonder of “parent power”! Well done.

Well presented conference, very clear, very informative – giving clear direction and help especially for parents like me, just starting out.

So interesting. Congratulations on such an informative conference. My son has complex epilepsy. Thank you to the staff who put me in touch with people who could help.

Wonderful – I cried, laughed and learnt a lot.

This was a fantastic event. It was informative, helpful, wonderfully organised.

Thank you very much – EVERYTHING was wonderful – going home with HOPE and HAPPINESS for my child.

Fantastic conference – I now have hope.

A thoroughly informative and enjoyable experience. I have gained hugely from attending. Thank you and well done!

I felt close, as if we are in the same journey, it gave me hope.

Fabulously organised – you did an absolutely amazing job & all deserve a medal. Thanks so much on behalf of the parents & kids! Please do another one as soon as possible!

Congratulations to the Directors of TA and thank you so very much for your inspiration and example.

A really mindblowing conference, hopefully life changing.

The pictures of children were amazing and required no explanation of why we were here. A great, great idea.

I honestly think that TA did an incredibly impressive job this time. I have come away with a clarity and sense of empowerment. You can’t ask for more than that!

Great experience and a real boost.

It was very helpful. Thanks a lot. I am new at the moment. I wish I could attend more in the future cause I found it more helpful to me, and creating more ideas on how to help my son.

So informative and gave me so much hope. Loved the parents’ stories, nice to hear it first hand.

Please keep giving us hope. And well done for getting this together. You have changed our child’s

Fedback from professionals and partner organisations The Treating Autism document detailing the various peer-reviewed research on medical comorbidities potentially co-occurring alongside a diagnosis on the autism spectrum represents a scientific tour-de-force and is my go-to reference on this important topic. Freely available and providing hard science to complement the many, many observations from people with autism, their parents and other caregivers, this and other work from the charity are proving highly influential for which I offer my sincere thanks.

PW, Researcher, UK autism research organisation Dear Treating Autism, Thank you very much for sending me the book “The Autism Revolution”.

I will read it and am sure it will influence my practice in some way.

I may also be able to recommend it to some families.

Dr WS, Consultant Child and Adolescent Psychiatrist Treating Autism provide a valuable service for parents and for the community. As yet we do not know what the pathophysiology of autism is, and therefore it is important that we explore every possibility that it is a preventable and/or treatable condition. Treating Autism provides such advocacy and there is little doubt their Co-Morbidities document has made a substantial impact on the standard of care patients with autism receive and indeed their efforts are visible within current NICE guidelines. Preventing a non-verbal patient suffering unnecessary pain is such an important contribution to society.

DG, Clinical Researcher, UoM Thank you very much for sharing this document… We do recognise how important supporting people to be in good health is, and to help make sure that there is a good understanding of the impact that co-morbid medical problems can have for people with Autism, we will signpost teams towards the work that Treating Autism are doing, including this work looking at the difficulties created by co-morbid health problems. Once again thank you very much for sharing this with us.

MZ, major UK charity for support and advocacy for people with learning difficulties