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9 Comments Posted on March 5, 2014April 21, 2017 Autism, Patient Talk

Parents of Children with Autism – what were the earliest signs of autism you noticed in your child?

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Early signs of autism

For my wife and I it was regression.

For the first two years of his life our son John was fairly typical of his age group. A bit slower in speech but not by much.

Just before his second birthday however things began to change. His ability to speak and the development of number of other social functions such as smiling not just halted but went backwards. a year later he was diagnosed with autism.

Since then I have always been interested in early signs of autism within the autism community.

So we have decided to run a short poll to find out a bit more about your experiences. It would be great if you could use the comments box below to share in a bit more detail about the early signs of autism or ASD in your child.

Many thanks in advance.

Rarar85	My 3 year old doesnt speak he say two words but never a string of words, these words then get replaced by new words such has juice mamma look yuk ouch once a new word comes along you know longer hear them. I have been told that he is asd BUT they dont have enough to give him a full diagnosed also telling me he has delepment behavoiur problem hes not bad he has a very good routine which nursey say cannt be changed and if it does it a stressful time for him i feel like i hit a brick wall
LynnShephard	I swear i could have written this myself about my 2 yr old. As well im 43 yrs old & a stay at home mom. I have infants & toddlers coming weekly as well. Ive had him to so many drs & they all claim he has “very good eye contact” however his speech at 14 months. He barely says 5 words that no one but me understands. However he understands everything you say to him. Smart as can be. I know in my heart there is something wrong w him. Also Thomas the Train is his all time favorite thing. Send me Facebook friend please Lynn Shephard
AlyssaLindley Osborne	My daughter would scream, whale, and was running (when she started to walk) to any door to get out at her Peds Dr.She wouldn’t let him touch her at all! I was so stressed I would sweat. We couldn’t take her out to eat, esp. To dark restaurants. We couldn’t get professional pics, she wanted to “go” as she always would say. She’s on Zoloft and what a different kid! Though she still gets a little apprehensive.
LeslieBond	Samantha asks what are the earliest signs of anxiety? This is how it was read on Face Book
SharonNJohnHooten	My 2 1/2 year old has a vocabulary of 2 words and still working on others daily. I noticed at 9 months he was gonna be a special little man. He’s smart as a whip but doesn’t speak, cuddle or socialize. He has severe separation anxiety as well! We have OT, speech, behavioral and play therapy 4 times a month and hoping for more! Worked really hard and got all my ducks in a row and have already been approved for his SSI so that should help a lot with therapies and school help! I am lucky to be a much older stay at home mom! It helps a lot!!! God bless all these little guys and I can’t wait to find his hidden talent! Right now he has a fascination with trains!!!!
lisalammert831	I noticed my son was waking up every 45 minutes when he was just born. Dr told me it was natural but I has never experienced anything like it before. He sometimes wouldn’t sleep at all. Then as he got older he didn’t speak at all. That’s when I knew for sure something was not right. I ended up switching his dr because the one we had just said it was typical boy behavior.
BrittanyMcKillop	My 2.5 year old has a vocab of about 10 words. He doesn’t understand simple instructions either. Big behavioral issues. Always hurting himself or others. Very destructive. We noticed at about the age of 1… He opposed affection and showed no interest in anyone or anything else. He wasn’t saying any words and to get his attention was a HUGE effort. He has been diagnosed with Autism recently.
DVDspnr	When my autistic son was two weeks old, my wife tried to hold him in a carry on holding bag for babies that she put on her chest. ( we were going to travel). My son reacted strongly against holding him in that position close to her. We could not use that holding bag for him. We gave the bag away to a friend of ours who was expecting a baby. She had no problem using it for carrying her baby. This was the first instance that we noticed some was wrong. Way before he had other behavioral problems when he was growing old…Best regards
KimMcTaggartOsmar	We also noticed the lack of speech and eye contact at age 2. We were lucky that we had to put him I A prescreening for preschool and a lady they worked with an agency and she was there volunteering. She rushed him in. Had he not, god knows where we would be now. He has gone thru IBI at age 5 1/2 (yes it took that long to get him through all the wait lists); and graduated and was put I to mainstream schooling last year. He is now in GrDe 5 and 11 yrs old. With a TA but I. The class 80% of time. 😉

Leave a comment Posted on March 3, 2014September 1, 2018 Autism, Diet, Patient Talk

Making Changes for Autism Spectrum Disorder through Gluten Free and Casein Free Diets – A guest Post from Karmel Ungerleider-Abrams of Progressive Nectar

Karmel Ungerleider-Abrams

Take charge and rescue a loved one from Autism Spectrum Disorder (ASD) through diet. ASD is an all-encompassing term for a group of complex disorders of brain development. For many children with ASD a Gluten Free (GF) / Casein Free (CF) diet can assist with symptom management.

Why go Gluten-Free?

Many children with autism have food allergies/sensitivities due to digestive or immune system dysfunction, especially if there is inflammation of the gut. If foods that are symptomatic for a child are digested you may see behavior issues and or physical issues arise until the gut is healed.

Many children crave dairy and/or wheat because certain peptides can bind themselves to the opioid-receptors of the brain leaving them craving more—like a morphine drug addiction. This seems to occur because the body is unable to breakdown the peptides completely. You may find the following issues due to this abnormality function; sleeplessness, inattention, self-abuse and abusive behaviors.

Find Experts and Resources to help.

By working with your medical provider and nutritionist, you can discuss a food elimination diet assisting your child moving towards a GF/CF lifestyle. Many studies have recommended removing dairy from the diet first for a week, and then eliminate gluten closely after. You will probably see results more quickly from removing dairy. It may take longer to notice a change after removing gluten from the diet, as it can linger in the body for up to seven years after elimination. Please note when removing dairy from the diet, calcium and vitamin D supplements are necessary. There are many organic whole foods that contain calcium and vitamin D on their own which can be worked into the diet. A great place to start is by viewing the UCSF Calcium Content Food List. Also there is a calcium calculator provided at the International Osteoporosis Foundation site.

Change is not easy, but worth the results.

Changing a diet is not easy, but there are resources and fun creative ways to present food!

Coconut Almond encrusted chicken strips

We here at Progressive Nectar—your recipe resource for food sensitivities—love to get creative and play with our food. Check out a few links below to recipes your children may fall in love with.

Burger Loaded with Veggies

Gluten-Free Almond Coconut Fried Chicken Strips

Chicken Apple Sausage and Greens

Green Pasta Sauce (Almond Basil Pesto)

Chocolate Avocado Pudding—Non Dairy

If you haven’t tried going gluten-free, try it for thirty days and see how your family feels. Feel free to use Progressive Nectar us as a resource for culinary inspiration along with your local and online Autism support communities.

About the author:

Karmel is a food writer and Co-Founder of Progressive Nectar Publishing—producingprogressivenectar.com, a recipe discovery site focused on gluten-free and special diet lifestyle. She lovesgluten-free cooking, snowboarding, mountain biking, volunteering at the South West Charter School and living in Portland, Oregon with her family and dog Boo.

Other Resources:

Summary of Dietary, Nutritional, and Medical Treatments for Autism – based on over 150 published research studies By James B. Adams, Ph.D. Director, ASU Autism/Asperger’s Research Program

Autism Society- Oregon Chapter

National Autism Association

Autism Speaks

Feingold Diet

5 Comments Posted on February 27, 2014February 27, 2014 Autism, Patient Talk

Autism – How long did it take you or a loved one to be diagnosed with Autism or ASD?

Our son who has autism

One of the recurring topic discussed on our Facebook page AutismTalk is the issue of how long it take to get diagnosed with ASD. You can check out the discussions here https://www.facebook.com/AutismTalk.

In the case of our son John it took around six months from the time that the issue of autism was first mooted to a final diagnosis. You can read more here about his diagnosis (https://patienttalk.org/how-easy-was-it-to-get-your-child-diagnosed-with-autism/) as we$$ as reading the story of others in the same situation.

Now, of course, the time taken to get an autism diagnosis will vary for healthcare system to healthcare system. Even that being said we are very interested to get a feel timescales among our readers.

We have set up a poll whose objective it to find out the length of time it took you or a loved one to get diagnosed with autism or ASD. We are thinking from the first time you contacted a healthcare professional about the symptoms to a final diagnosis.

It would be great if you could tell us more about the process in the comments box below.

Many thanks in advance.

34 Comments Posted on February 26, 2014February 28, 2014 Autism, Patient Talk

Parents of Children with Autism – Please help a student at the University of East London with some research on the emotional impact to parents with a child with autism

University of East London

We have recently been contacted by Priya Summan at student at University of East London who is conducting some valuable research with parents of children with autism. It would be great if you would consider taking part!

Summan shares “My name is Priya Summan and I am a 26 year old final year student at the University of East London. For the past four years, I have been studying my undergraduate degree of Early Childhood Studies with Special Educational Need and currently, I am in my final year doing my dissertation. I have a background in early years and special needs and have worked with a lot of children on the autistic spectrum. I became interested in special needs especially autism, is because I have always been intrigued with the way society behaves towards children with autism and how, this has an affect on the child itself and finally, I wanted to learn how children with autism learn and play amongst other children .

My dissertation is based on the emotional impact of parents with a child with autism. I want to know how parents learn to cope with their child’s diagnosis of autism and how, parents feel society behave towards their children. My dissertation is due for submission 6^th of May 2014.

The methods I am using for this dissertation are questionnaires and interviews. If I am able to, then I would like to put up questionnaires where, parents would be able to fill them in and then at the end, provide their contact telephone numbers then which, I could contact them in regards to a telephone interview to get more in-depth details of parental experiences of having a child with autism . Please be rest assured, that all information provided for this dissertation, will remain confidential between my self and the participants who fill out the questionnaires. Amongst the questionnaires, I will also put up consent letters, which parents will need to mark to make sure they understand the basis of the research in question. After the research is completed, you are more than welcome to ask for a copy of my dissertation and I can provide this without hesitation. After the research is completed, all data collected will be shredded and no data will remain after this. On the questionnaire, at the end, it will say patient signature where I will only want parents to put ‘parent 1’ ‘parent 2’ etc so that confidentiality is remained at all times. If parents wish to contact me at any time, parents will be provided with my university email address 0612370@uel.ac.uk on which, parents will be able to contact me at any one time.”

If you have an questions for Ms Summan please either email her or use the comments box below.

UPDATE

The questionnaire and consent form are now ready. Please can you download here Questionnaire for autism research and here Consent tick sheet for participants in autism research.

Please can you email to Ms Summan once completed at 0612370@uel.ac.uk

Many thanks in advance

1 Comment Posted on February 24, 2014February 28, 2014 Autism, Patient Talk

Home-school communication for children with autism and other special needs. Read our guest post from Jessica Brundle of Sponsored School Planners

Sponsored school planners for students with autism

Welcome to the latest in our series of guest posts regarding autism and education. Today Jessica Brundle of Sponsored School Planners tells us a bit more about their innovative way of improving home-school communication aimed at children with autism and other special needs. Brundle also invites you to take part in short survey to help them make the product better.

Ms Brundle shares “Parents, what are they thinking about schools? We did the research, and then took it upon ourselves to provide a tool to help boost an improvement in home-school communication. With our tailor-made, informative planners here’s what we addressed and we put it all in one place, because we care. The planners are to be issued each September.

Communication

As parents we set out to improve home-school communication. We believe it’s a crucial element to monitor a child’s progression, and wanted to be able to monitor our own children’s education and developments. We are now on a mission to help all other parents and schools too. After speaking with Oftsed we were advised that on inspection improvement in home-school communication is well regarded, we’re invited to the school site to show and explain to Ofsted how each school utilises them, each planner is tailor-made for each school, and absolutely free, with no cost to the school. We fund the planners by seeking business sponsorship; we then allow ethical businesses relating to children’s services, such as swimming clubs, dance schools, football clubs, tutors, driving instructors and party entertainers etc. to offer a discount to The School Group (parents, pupils and teachers). We are essentially giving as much as possible to different aspects of the community. We believe it’s time to pull together and are absolutely passionate about working to help others.

We believe monitoring a child’s progress both academically and socially are just as crucial as each other. Academics are an important aspect of a child’s education and lessons are important, we also believe social skills are just as important to better the next generation so they can have a positive, ethical input in the community during their childhood and adult lives.

It’s crucial to install good ethics from a young age so we provide planners to children aged between 4-16 years.

Why?

We are absolutely passionate about the four following fundamentals in creating our next generation, we are parents who genuinely care and have the children best interests at heart, we want to make a difference.

Anti-bullying, we have free information in the planners regarding anti-bullying, we need to raise a respectful generation, not a bunch of bullies, we need to accept everyone, and so do our children, we tackle bullying head on in our planners. We will also speak in school assemblies to promote and explain what’s in the planners and why, we fund this through our charity “Bully Off”. All schools have golden rules; our favourite golden rule is “Keeping everyone included”.
Internet Safety, safeguarding our children against chat rooms etc.
Healthy eating, balanced diets, types of foods, and discounts on healthy options.
Tips for parents in connection to how children are being taught at school. Parents were taught in a different time, how are they supposed to know how the children are being taught, how are they supposed to help with homework? The planner gives welcomed tips.

Going to school is important for learning to interact with other people. Learning social skills is just as important as learning history, math, science, and English. Accepting others for who they are and seeing the good in others, realising we are all different, realising that no matter what we can all help each other, now that is what we like to call an education. That way you can learn the fundamental elements before getting into real world situations to better prepare you.

Testimonial, Headteacher, Mrs Rachel Hall of Newton Hill Community School “We can’t thank you enough for what you are doing, you are really bringing the community together and the planners are great, we can’t wait to use them come September, thank you so much, I like the fact they are tailor-made and not box-standard off the shelf, they really are unique”.

The planners are a fabulous tool for parents of children with special needs to monitor their child on a day-to-day basis. Here’s what some of our parents had to say already using planners:

Rebekah Finney-Edwards “All I can say is it’s a blessing people are out there like yourselves because these kiddies would get lost amongst the system without you. Good luck and I hope they work for many young children because it’s a life-long skill they are being taught and if they can be taught to write down and plan things early they will have a fab skill to carry them through life”.

Helen Greenhough “Oliver is at an autistic school in Castleford and he has a diary which I and his teacher write in daily. It’s great because I know what he’s done at school every day and I can pass on if he’s had a difficult night etc”.

Jo Foster “I work in a special School in Cannock and we have them for all pupils, differentiated for individual needs. They are a very important and effective means of communication”.

Jackie Reeves “When my son was in primary (he is 20 now), the school didn’t have planners but me and his teacher thought it would be a good idea so she made him one”

Jackie Reeves “The letters thing ‘ah I remember it well!’ Missed special assemblies and didn’t send money in on time for trips all too often because of missing letters … until he got the planner!”

Caroline Jones “They are really helpful tells us what kind of day he’s had and his different activities he’s done in the day. They are a great way for me to let them know if he’s not slept well and so on. A lot affects his mood and behavior, brilliant idea”. ”

Here’s a link to a short survey, it would be good to receive more comments regarding the project.

https://www.surveymonkey.com/s/D2RHN38

You can contact Sponsored School Planners below

www.sponsoredschoolplanners.co.uk

Twitter: @SponsoredP

Facebook: Sponsored School Planners