Feedback from our beneficiaries
Feedback from our beneficiaries
How our beneficiaries feel about the charity
Feedback on Thinking Autism Events
I must admit last weekend at the TA Conference was the first time in a long time that I felt like I really belonged. It didn’t matter how long I talked about autism, we were all truly interested in each other’s paths.
I am a parent who had a child recently diagnosed with autism when I came to know about thinking autism (happened to attend last face to face 2 days conference in central London- I think in 2017/2018). There was absolutely no support to understand and prepare myself for what I can and need to do for my child. All mainstream institutions made me drown. Coming to conference and meeting lots of other parents gave me a bigger picture and there was lots of help and advice available to start. This is a very helpful platform where parents get updated about what is available in bigger world to help our children and it’s not shutting the door at us which unfortunately is the situation otherwise. We are group of parents and trying to help to thrive and survive our children who have so much potential but systems are putting us down. I would fully endorse and support it. I am a Dr myself.
My very severely autistic son is 16. I first attended one of your conferences when he was 5, I’ve been attending them ever since. It’s given me a community and a support network. It’s fantastic to connect with likeminded parents and to feel there’s someone out there who cares and is going through the same stuff … and have fun together. And I love the learning during the lectures!
I’ve found hope and inspiration by the amazing speakers: following a lecture by a biochemist from Calgary university hospital we managed to get faecal transplant treatment at the Evelina hospital (Guys and St Thomas’ hospital) for our son’s severe gut issues.By introducing the specific carbohydrate diet following a conference, we managed to stop our son’s absences and significantly improved his health and quality of life.
Feedback on Information Thinking Autism shares
All this would not be possible without sharing information and exploring other ideas with parents and members of the TA charity.
Your recently published article about Autoimmune Encephalitis has really strung a chord and we are now exploring whether our son might have AE, with help from the Evelina and GOSH. The article has inspired me to keep going, keep looking and find help for my son who suffers badly from uncontrolled epilepsy. You give access to cutting edge research by reputable researchers and doctors. Thank you so much!
Incidentally, I used to suffer from terrible arthritic pain in my finger and knee joints at the age of 38 which completely disappeared when I too followed a gluten and dairy free diet and these have not yet returned 21 years later. So a huge thank you to TA for bringing Paul’s research to our attention. And of course now diets free if gluten and dairy products are so mainstream!!
Other physiological problems have also been helped greatly by following the research findings that Thinking Autism bring to the attention of parents such as the recent links between glucose metabolism and challenging behaviour. This has lead to discovering that my daughter has a rare genetic variant related to glucose metabolism. There is still a long way to go in terms of research and I am grateful that Thinking Autism are there to bring articles and findings to our attention.
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 [redacted] speak about her success with [redacted]. She has since helped both myself and my son and I am so grateful for this.
Feedback on Thinking Autism publications
Quality of Life
I’m the mother of a 9 years old in the autistic spectrum and Thinking Autism has provided me with an incredible source of information for holistic treatments to help my son. The charity is a wonderful local platform to be able to connect and liaise with other special needs parents and has provided over the year support and help. This has really been beneficial for my son and improved his overall well-being over the years. I’m really grateful to all volunteers who spend their own time to run the organization whilst dealing with the difficult job of parenting a child with special needs.
Thinking Autism has supported us in our son’s journey with ASD and ADHD and high levels of food intolerance and at one point Borderline Anxiety Disorder. Our son is healthy beyond anything we could have imagined between the ages of 1 year old and 15 years old. My husband and I are still married. We have gained knowledge to better aid our parenting autism journey. Without Thinking Autism our son’s quality of life, our son’s future, our marriage and our life as a family of four, would all have been broken, battered and unrecoverable.
I have appreciated the community of other parents who are living through the same difficulties, who cope with that by being as open minded as possible and taking every opportunity to learn.
I have been an amazing advocate for my son in all areas and feel that I have taken enormous strength from the knowledge that I am not alone.
He is now 27 years old. At 3 he was unhelpfully diagnosed with ‘developmental delay’. He was able to read but unable to speak along with a lot of other presentations. Because of this meaningless and inaccurate diagnosis he was given an inappropriate and therefore educationally and socially damaging placement at nursery and school. On following up articles that Thinking Autism have shared from medical journals I was able to press for a more accurate and detailed diagnosis. His more accurate diagnosis is Autism, PDA, verbal dyspraxia, global dyspraxia, misophonia, sound and touch sensitivity, auditory processing disorder, visual processing disorder. Obviously, with this more accurate diagnosis we could pursue appropriate speech therapy, vision therapy (including tinted spectacles) and this also led to a more appropriate school placement.
Further to this and reading more articles posted by TA I have also become aware of the likelihood of an auto immune disorder. This meant that when he recently had severe and worsening symptoms of food poisoning, I was able to have an educated discussion with the A&E consultant leading to a prompt and timely prescription for antibiotics thus avoiding a hospital admittance.
Reading the many published articles on the likelihood of possible gut issues and consequential food sensitivities in autistics led to trying to avoiding certain foods with the result of him no longer suffering from his ‘drug resistant’ epilepsy (tried 3 different NHS meds with extremely bad side effects).
My son is now a young adult with severe autism and I have a daughter with autism too. Each time we visit medical practitioners for ailments, illnesses and symptoms – of which there have been many over the years with both children – the medical practitioners have dismissed their illnesses with comments like “this is just autism”. And sent us home with paracetamol and ‘rest’.
My son especially has complex medical needs as well as his autism and mainstream medical treatments have been limited at best. With the support and knowledge we have received from yourselves and your friendly online community, we have seen tremendous health gains with both children. My son for example had severe gut impaction and was very skinny pale looking. The GP sent us home with advice that it was probably due to his autism behaviours. After speaking with other Thinking Autism families I realised that we should request an X-ray, which we did. This showed his gut was seriously impacted and this would have been very painful for him. He could not communicate this, had we listened to the GP we would have put it down to my son’s ‘behaviours’ and not pushed for an X-ray. There have been hundreds of examples of this relating to diet, supplements, therapy interventions etc. All of which have brought my son to a much healthier, happier and hopeful future.
Thinking Autism are ALWAYS my first port of call with problems. And we have never been disappointed with the support we have received. Please keep doing what you’re doing and making a difference in families’ lives. We are happy to support you in any way we can so you can continue to support families like us.
The educational resources provided by the charity have empowered me to make the right choices for my son and seek the support of professionals that have been able to optimise his physical and emotional his health.
Thinking Autism has always filled me with hope and positivity about the proactive ways Autistic children can be helped. This hope is what always kept me going on my darkest moments and it is this hope and belief that my son could be helped and then knowing how to help that had made him the happy healthy person he is today!! For that I will always be eternally grateful!
TA have also produced informative booklets about autism aimed at various groups of professionals such as general practitioners, teachers, and care assistants, and literature on subjects such as co-morbidities in autism. For a long time GPs dismissed co-morbidities as “just autism”, and failed to treat an abdominal pain, which could be due to a bowel problem or even appendicitis, which my grandson experienced. He was lucky in that one of three consultants in A&E decided to keep him in hospital overnight (the other two wanted to send him home). The following morning a scan revealed an inflamed appendix, which when removed was found to be close to bursting! I think GPs are better informed today as a result of the activities of TA and other organisations.
My grandson has been transformed from a small miserable boy who cried a lot, didn’t speak, didn’t wear clothes, ate a very restricted range of food, didn’t interact with his parents or his sister who was two years older, to an adult who is able to cook his own meals, wash his clothes, and converse enthusiastically about his subjects of interest. His improvement is the result of the hard work of his dedicated parents, who applied what they had learned from the TA conferences and literature about the importance and benefits of a healthy microbiome and cognitive behavioural therapy. My grandson still has significant problems such as anxiety associated with extreme sound sensitivity.
Now approaching 25 years old, my son and I have been with you from the start. At Thinking Autism conferences, meetings, support groups and in reading the comprehensive information provided on your website and in other communications, I was able to read about the latest research; hear about simple, safe interventions which could be easily applied to alleviate his suffering, and I could engage deeply with others whose children were experiencing similar health issues to my son. I will never forget feeling of huge relief when a UK based charity focusing on the health and wellbeing of our children came into existence. Very little was offered to us by the medical establishment when my son was diagnosed with profound autism “it’s just autism, I’m sorry” “prepare for him to be institutionalised…” Thank goodness I didn’t listen to this advice! My son’s biggest issue – gastrointestinal symptoms which made him miserable and severely affected his behaviour – proved very amenable to various dietary interventions and nutritional supplementation, many of which have been successful over the years. These ideas were most often drawn to my attention by cutting edge scientific research presentations and parent experiences presented at the totally invaluable Thinking Autism conferences which I would previously have had to travel abroad to hear. My son is a living example of what can be achieved when underlying health conditions are addressed in profound autism. He is now a happy, calm, confident, practical young man living with autism successfully within the family, without pain or rage or disconnection – and the ability to deal with his own toileting needs. Thank you Thinking Autism!
Many things have impressed me over the years about this charity. Even while Thinking Autism grew in size and influence, your organization has remained doggedly true to its original aims and has not been side tracked by divisive politized issues – such as those surrounding vaccinations – thus avoiding controversial distractions. Bravo, you have kept your focus. I am also very happy you do not shy away from inviting top scientists to present their cutting-edge research at your conferences and inviting UK medical professionals to attend and engage. As the tsunami of autism diagnoses continues – and sadly the response from the medical profession remains decidedly underwhelming – we increasingly need more well-informed health care professionals in this country to focus on helping our children with the health issues common in autism. Thank you for going the extra mile to engage with health care professionals – we and our children need this!
I cannot even fully describe how much the support that Thinking Autism provided has meant to me over the years. It’s been a lifeline at times and their support has meant that I felt less alone and isolated when dealing with all the hardship that my child and our whole family have been experiencing as a result of different health difficulties we were faced with.
I would like to point out that my husband and I already had a lot of input about our daughter’s special needs from different doctors from well-recognised UK hospitals. However, the Thinking Autism charity, being run by parents for parents, gave us that much needed human touch side of things, the parents that are in the management and also the parents members provided us with so much understanding and many of them invested a lot of their time in trying to make our life easier by recommending the relevant specialists and nutritionists with a particular interest in the field of common comorbidities and their such dedicated input lessened our burden and helped us reach more adequate help in a faster manner, which enabled us to restore better quality of life all round for all of us. I cannot praise the work of the Thinking Autism charity enough.
The charity organises an annual conference, with speakers who are at the top of their game
I was able to connect with professionals and learn about various therapies, and approaches that would address the symptoms of autism and help my daughter progress.
The team at Thinking Autism also regularly share information regarding medical advancements/therapies that can be helpful for people on the spectrum. I am happy to say that as a result of the knowledge I gained, the connections I made and the consultations that I have had with various professionals over the years that my daughter has made huge progress.
She is now a confident young adult with a passion for theatre and music and loves to perform on stage. She is extremely popular at college and is a kind and compassionate young woman. There is huge progress being made in the field of autism and it is very hard to come across information and resources. Thinking Autism has been an invaluable source of this information. I am extremely grateful for the work that this charity does. In my opinion there is no other autism focussed charity that does the kind of work that they do. Thank you Thinking Autism!
The charity is like an extended family for us. The members are fantastic at supporting one another and they understand what we’re going through and provide the advice and support we need. The conferences are amazing. I get to meet other families and find the quality of the speakers and the information they impart to be both inspiring and motivating. I would not have made it this far in such good shape if it were not for Thinking Autism supporting me along the way.