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Autism Coach

Parent to Parent Advice from Autism Coach Customers


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Advice and Encouragement for Parents or Guardians of a Child Just Diagnosed with an Autism Spectrum Disorder

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These words from the heart of advice and encouragement were provided by parents, guardians, and individuals within the autism spectrum who participated of our 2009 survey.  We asked for one piece of advice, and most people generously shared much more.  The most frequently given pieces of advice were:

  • Have hope and don't give up - it gets better!
  • Appreciate your child for who he/she is - they are the same child they were before receiving a diagnosis.
  • Do your research and study everything!
  • Trust your instincts - you know your child better than anyone else.
  • Despite the shock of the diagnosis and feeling overwhelmed, take action immediately - the earlier the intervention the better the outcome!
  • Don't let "experts" tell you nothing can be done - it's simply not true. 
  • Research resources that are available to your child.
  • Join a local and on-line support groups.
  • Get a knowledgeable practioner with expertise in autism.
  • Go on the Gluten Free Casein Free (GFCF) diet or variations or combinations of special diets (such as Specific Carbohydrate, eliminate artificial ingredients, allergens etc).
  • Implement an intensive behavioral/speech social skills/language therapy such as Applied Behavioral Analysis (ABA) or Floortime.
  • Do not vaccinate/stop vaccinating the child.

 

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 Hang in there and do all you can.   Things do get better with perserverance and caring.


Little Johnny is the same kid that walked into the doctor's office before the diagnosis; and the diagnosis changed - not little Johnny.

Read up on it & laugh with your kid a lot everyday. (I know, that's 2 things.)

Don't believe the hype about autism being a tragedy or a terrible disease. Your child is not damaged. You did not "lose" your child to autism. Your child is beautiful and unique and should be loved and appreciated the way he/she is. You should support his/her learning style and needs and understand that different is just different - NOT broken.

Study everything you can get your hands on so you can participate in making informed decisions, and trust your instincts! You know your child better than anyone else!


If I could tell a parent of a newly diagnosed child anything, it would be to do the GFCF diet rigorously for at least three months to see if it helps. It was a miracle for us. We also found that OT and speech helped make up lost time.

Know your child! Look at all resources available.


Be informed. Research as much as possible and never ever forget that you know your child better than anyone!


Do not give up and do not get overwhelmed. There is so much information out there, some of it is great some is just crap. Do your research and do not let the doctors tell you that nothing can be done.

Try everything, never give up.

Be ready to take action quickly.  Get them in a good ABA program.  Find a DAN doctor and figure out how to detoxify your child.  Read, read, read as much as you can and get inspired to take charge knowing you can make a big difference in your child's life.


Read, study, learn. Find a DAN! doc and get started analyzing your child's biological needs. Find someone who understands the base of ABA therapy to work 1:1 with your child (it could be a "grandma-type" like me or a para-professional). But, first and foremost, read, study, learn - and do it quickly and with a sense of "I'm going to learn everything I can about this" rather than a sense of dread. Don't put your head in the sand, and don't believe that others (school systems, therapists, etc.) will take care of this for you. You, as the parent/grandparent/guardian need to know and understand what's being offered in the way of therapies and biological treatments to make a plan for your child. Again, start with self-education and analyzing the biological needs of your child.


Get interventions in place quickly. Do the diet. Start chelating. B12 shots. Oxidative Stress Relief (OSR). 30+ of therapy.

Advise get over being in denial.  Get treatment young.  It is not about you, it is about the child.  Pride has nothing to do with it... Advocate, Advocate, Advocate, therapy Train yourselves read all you can not fiction facts regarding autism educate yourself as much as possible!!!


Keep trying, Don't listen to the masses, focus on the gut.

Don't vaccinate anymore. Cut out mercury-containing seafood and junk foods. Don't go GFCF unless you incorporate Candex, anti-yeast herbs and biotin (to avoid starving yeast going mycellized form and causing leaky gut)

Seek out qualified advice and get a classroom aid if the child can be mainstreamed. Experiment with the vitamin supplementation and diets. I have seen them improve the condition in about half of the children. If they don’t work, no real harm done other than the spending of a little money.

Don’t give up! You will feel completely overwhelmed but many kids with autism have the potential to live a “normal” independent life…it does happen- I know for a fact, because it happened with my kids! I’ve never told my kids that they were diagnosed with anything. They both know they needed a little extra help with speech, etc., but not that it was autism.

Despite the shock of diagnosis and being completely overwhelmed, line up resources and support network as soon as possible. You can't do it alone; we parents of kids on the autism spectrum must stick together. Utilize great online web sites, such as for Autism Speaks and the Asperger Association of New England. Also, disclosure of the diagnosis has opened up many doors to services or much needed accommodations (such as preboarding pass on plane trips). I read the book ""Can I Tell you About Asperger Syndrome"" to my son's 2nd, 3rd and 4th grade classes and now he is treated very well by his whole class and has not experienced bullying. We all need to face the fact that our kiddos march to their own drummer and other kids will pick up on that. If you explain it in such a way as to focus on the positive and explain the reasons for certain behaviors that might be confusing to other kids, they will rise to the occasion!! He also has a BFF and has had 3 sleep overs!! Hang in there!!


Find out their illnesses and address them right away -- GI, Metals, Viral, allergies. They can't make progress in any therapies without feeling better.

DO NOT VACCINATE.

Try everything one at a time if it is affordable.

"First check if it is an autistic spectrum disorder or sensory processing disorder or combination - there are many kids who are diagnosed as ASD when they present only SPD signs. If ASD only: Read info on ABA (""A work in progress"", ""Teaching kids with autism"", order DVDs from ""Establishing operations"" and ""More than Words"") Try to find info on neuropsychology from Russia If ASD and SPD - read ""Using Intensive Interactions and Sensory integration"", then ""Practical Sensory Programs for students with ASD and other SN"" and ""Starting Sensory Integration therapy"", probably additionally ""Early Sensory Skills"" If SPD - find a GOOD Occupational therapist, who has access to professional tools (Sesnory profile), do skin test to confirm diagnosis and follow sensory therapy. Advise to medical ""field"" - separate sensory issues from autism. they are 2 different disorders, people are physiologically different, easily recognizable. otherwise you try to find a unique cause for different sicknesses and find a magic pill which would treat a cold and tooth at the same time."

If you do nothing else go to a clinic that specializes in speech therapy for kids with autism. The sooner they learn appropriate responses to toddler questions the sooner they try to interact with the world. It is not that they do not want to they do not understand the rules of conversational exchange. Never never give up hope.

Research options and if something works continue, if not, try something else. Don't immunize if family has auto-immune or mental health issues.

IMMEDIATELY eliminate dairy, gluten and soy from your child's diet. Then get all services you can and start right away.

To look for the unique heart of your child, the part that stands out from everything else and shouts 'this is MY child' and to focus in on that - the harder times are easier to handle when you have a positive area to focus on. Every child, autistic or not, has a special part of them that stands out from everything else. Parents whose child has recently be diagnosed often see only the problems, not the uniqueness that is their child's heart. I would just encourage them to look for the good and not dwell on the bad.

Try whatever works best and one at a time and try not to worry too much, it doesn’t help and it will get better! Try to join a group with others in similar situations as you won’t and yours won’t feel so judged, etc.! Prayer really helps too. Also, know that science is starting to catch up, and I think we may seem even more help in this area in the future, so please hang in there, you are beautiful! =-)


EVERY CHILD IS DIFFERENT AND MAY HAVE DIFFERENT UNDERLYING CAUSES, SO DO THOROUGH TESTING WITH TOP SPECIALISTS INCLUDING AN EEG FOR UNUSUAL SEIZURE DISORDER WHILE SLEEPING AND LYING STILL - THIS COULD BE TREATABLE LANDAU-KLEFFNER SYNDROME VARIANT. DON'T ASSUME WHAT WORKS FOR ANOTHER CHILD WILL WORK FOR YOURS.

Get out there & learn everything you can possibly can. So much has changed & become available since the diagnosis of my daughter.. I wished we could go back & start over many times.

Connect with a support group, either online or in person. Do research. Autism is treatable, and you CAN do it!

"EARLY EARLY INTERVENTION! I CANNOT STRESS IT MORE....THE EARLIER THE BETTER. **MY WORDS TO OTHER PARENTS: IT IS STILL VERY EARLY BUT I FEEL PLEASED WITH THE HELP I'VE RECEIVED IN COSTA RICA AND FROM ALL THE DIFFERENT THERAPISTS AND FRIENDS. PARENTS NEED TO SEE THIS AS A PRIORITY AND A GOAL, NOT A STRESS. ALTHOUGH, IT IS QUITE A CHALLENGE; THE POSITIVE THE PARENTS ARE, THE BETTER THE OUTCOME- BELIEVE ME! IT IS VERY IMPORTANT FOR PARENTS TO ALSO DO THE BEST THEY CAN AT HOME BY PROVIDING THE CHILD WITH ""THEIR"" SPACE, SUCH AS A PLAYROOM AND PLAY WITH THE CHILD AND ENJOY THE FLOOR TIME PLAY!!!! HOWEVER, ALWAYS PUTTING LIMITS SO THAT THE CHILD DOES NOT CREATE BAD HABITS THAT CAN HARM HIM/HER SELF AND OTHERS OR BEHAVIORS THAT ARE DIFFICULT TO HANDLE AS CHILD GETS OLDER AND BIGGER.... CHALLENGE THE CHILD AS WELL: DO NOT HAND THINGS UNLESS THEY TRY TO REPEAT OR ASK - EVEN IF ITS A SOUND AT FIRST! HELP THE CHILD!!!! AND REMEMBER: THEY DID NOT CHOSE THIS DIAGNOSIS AND NEITHER DID YOU- DO NOT BLAME ANYONE AND FOCUS ON HELPING EACH OTHER INSTEAD! YOU WILL SEE BETTER RESULTS THAT WAY!!! A BIG HUG AND KISS AND PRAYER TO ALL THOSE PARENTS - PLEASE DON'T GIVE UP, IT IS UP TO US TO MAKE A DIFFERENCE. JUST BECAUSE THEY ARE DIAGNOSED WITH AUTISM, DOESN'T LIMIT THEM TO BEING ""AUTISTIC"" FOREVER- THEY ARE TRULY SPECIAL CHILDREN- BRING AWARENESS TO OTHERS AND HELP OTHER PARENTS WHO ARE NEW TO THIS. WE ALL NEED IT. HERE ARE WORDS I THINK OF, WHEN I THINK OF AUTISM: ALWAYS UNDERSTAND THE IMPORTANCE SUPPORT MEANS AND ALOT of UNDERSTANDING THROUGH INCREASING SUPPORT and MOTIVATION. GOD BLESS YOU ALL!!!"

Determine his/her food sensitivities immediately. Address gut issues holistically and consistently. Get your child in a good behavior-based program with a naturalistic approach. Be prepared to make every moment you spend with your child a learning moment.

Read about the condition (including books written by adults with the condition) and alternative supplements/treatments, but be skeptical of many "new" supplements that have not been used in children for very long. There is no way of knowing their long time effects. Avoid any uncecessary vaccines in the future!

Don't use pharmaceutical drugs. Stick with natural supplements and keep trying them until you find something that works. It took me 5 years, but I think I finally found my son's supplement that's really helping. These kids need their little systems kept pure, not polluted with mind altering, tranquilizing drugs. Also, Pray, pray and then pray. Also, love them and let them know it every day. Don't treat them like something to be ashamed of, treat them like they're the most important person in your life. Study, study and start biomedical treatments Early intervention! (the earlier, the better). If you think there is something wrong, don't rely on your doctor for a diagnosis. I am a family physician myself - finished medical school in 2003 and residency in 2006 (recently!) and learned VERY LITTLE about autism. That will and is changing in medical education, but it is going to take time. The best thing you can do is push your doctor a bit and find out who in your county evaluates children with developmental delay.

Never stop trying!

Do your own research (the internet is a great tool), then make an appointment to see the closest doctor who specializes in autism. However, use your best judgment because specialists are not always right and you know your own child best. I tried the local CARD office and was very disappointed with their services. The specialists at Nemours Children's hospital are very good, and surprisingly so are the therapies and teachers at the public school our son attends.

That this is NOT the end of the world. Never ever let your child hear that your life/ their life would be ok "if only he didn't have autism". Reframe your thinking and don't be a victim.. Our son's autism has taught us more than I thought humanly possible about people, what's important, about love, about patience and I have felt pride over his achievements so intense my heart felt like it could literally burst right out of my chest. He has taught these things not just to us but to our relatives, his teachers, his therapists, his doctors, our friends, his friends. In the early days, his public meltdowns, his rigidity and his struggles brought out the best and worst in people we know and even in random strangers. I still remember acts of gentleness and understanding from strangers that to this day can take my breath away. Even the bad days have brought with them important lessons. Listen to your gut and your instinct when it comes to therapies and therapists and above all, love your child for who they are right now (not who they could be); love them fiercely and with every fiber of your being, they will feel it no matter where they are on the spectrum.

Start therapies early but let them be a kid and enjoy life too. Join a group and get support. Don't stick your head in the sand, get all the help possible-also, never stop hoping and praying...the rest of the story is yet to be told. My one piece of advice is don't give up on your child. You may just find something that will unlock his/her mind one day and all of your efforts will be worth it.

Find a good behavioralist, learn ABA (Applied Behavior Analysis) and stick to it. ABA is a learning system that has real-world documented results with autistic children. There is no other system that is as well researched or as productive with autistic children. ABA addresses how you do things not what you can do. Within the framework of ABA you can work on whatever goals you have for your child including sensory issues, physical development and education.

Stay optimistic and do as much research as you can to determine what the best things are to try.

RUN to your nearest DAN doctor and get the child on to a total wellness program. So many body systems are being affected and causing the brain to malfunction. You HAVE to address the underlying medical issues of your child or you will never get him functioning at a reasonable level. Behavior is due to lack of thinking power and lack of speech/communication skills. It can also be due to intolerable pain, obstructed bowels, brain swelling, etc. You cannot change the behavior until you remove whatever is preventing the brain from thinking/learning/communicating. Our regular pediatricians don’t get it. They think they can medicate them or drug them to oblivion to make the behavior go away. Good luck with that approach!!!

Talk with others that can relate.

To train the child with language and/or behavioral therapies and find out if the child have allergies to foods so they can be avoided. In my particular case the child has many food allergies and has constant diarrheas.

Milder cases of autism can be overcome simply with a change to a whole-foods vegetarian diet, which will take patience, flexibility and persistence. Be creative - start with organic fruit/soy smoothies or smooth soups and try everything until your child settles on a few staples.

Get a DAN Dr. & run blood/urine tests, don't waste time, get on the lists for lots of therapies (there are usually waiting lists), and get with your local school because they can set you up with an ESE teacher who will evaluate your child & set everything up to accept the child to early school at 3 yrs. old. our local school set us up with an ESE teacher who came to our house & did therapy with our daughter from 2-3 yrs. old! FOR FREE. (then at 3 yrs. she went into the special education school system). once your child gets to school they will set up an IEP for your child to monitor progress. it is important to constantly update the IEP!

Get on the internet & RESEARCH. Go ahead & try the Gluten free and/or Dairy free diet for several months,  You don't need a doctor to start that. look at www.generationrescue.org and tons of other helpful websites. due to the financial strain of autism.  I also went to the local social security office & applied for disability for my daughter. through this process i received funds that help us pay for therapies.M ost of all, don't freak out! I've been dealing with this for over 3 yrs., and all the services, therapists, & successful treatments DON'T happen overnight.

Keep fighting for your child!! no one else will!!!!

Find a DAN! doctor to treat the underlying biological conditions, and everything else will get better.

STOP VACCINATING....YOU ARE MAKING THEM WORSE!!!! Focus on the gut.....and healing it.

Patience is the key.

These children are special, listen to what they say even if it seems like nothing or endless repetition. I believe these children are here to help slow us down and learn to live enjoying each day. I also would say never loose hope or give up. Miracles can happen but if your not moving forward you may miss the chance to see them.

Get in touch with a DAN doctor. Get involved with other parents of Autistic children.

I guess if I could tell parents anything it would be to never give up. Those special moments mean everything and make up for all the times when you want to scream because you don't know how to help your child.

Research.  Start now.  Find support.  ABA, diet, etc.

Hang in there, it DOES get better.

The one thing I'd like parents of the newly diagnosed to know is that autism is biologically based, environmentally caused and can be treated! God or nature or whatever higher power you believe in didn't make your child autistic. And it's not "part of who they are." In my opinion, autism, aka vaccine damage, is a man-made layer obscuring a soul who's desperate to be free. We're freeing our child, slowly but surely. And seeing who she is, and was meant to be, has been well worth the several thousand dollars we've spent on her recovery and will spend in the future. We're not done fighting this demon yet. And I'm not giving up the fight until the day she's recovered or the day I'm dead, whichever comes first. Well, that doesn't leave us with a very cheery note to close on, now does it? I didn't mean to be so grim at the end--just wanted to make sure my determination came across.

Go to the Autism Research Institute and print the "summary of biomedical interventions" and get to work. Do not listen to mainstream doctor or pediatrician, most remain in the dark. Take control of your childs well being by using our most valuable tool during this tough time, the internet.

Find other parents who are farther along in their journey with autism to help guide you and support you.

Go straight to sequential Homeopathy!!

Therapy, and finding a regular peditrican that is open to trying new things for autistic kids.

Get through the guilt and start working on healing right away.

Try not to get flustered and don’t worry, it will get better.

Ask a lot of questions. Read everything you can. Talk to anyone you find about their experiences. Do not let anyone make you feel to blame for the diagnosis. Never let anyone make you feel like your child is to blame for the things they can not control. Always look for the reason behind the behavior.

My advice to any parent with an Asperger's child is to ALWAYS be there for them; provide guidance, unconditional support and above all love them for the very special kids they are.

First as a grandparent raising a child in the autistic spectrum I would say to parent or guardian find the Childs good mood buttons, what brings them joy, what gets their attention and holds it. Use these things as tools to get the behavior you expect your Child to have. In my case I might say hey if you get your homework finished we can go for a bike ride. That usually works for me if I need him to do homework. Also I have found that I need to be direct when I explain anything to him, I use language I know he understands. If he asks why he has to do a particular task I tell him. It is also important in our case anyway to make eye contact. When he was very young before we knew he was autistic we noticed he didn’t seem to pay attention to us when we were trying to talk to him, we would hold his face and make him look us in the eyes as we talked to him, now he will always look into our eyes when we talk to him. Of course now he expects the same thing from us in return. He also learns better from doing as apposed to verbal directions, I find that I need to show him then let him do under my supervision a few times before he gets the idea.

Try to establish a routine for your child. Identify what triggers behavioral episodes so that you can alter this routine accordingly. Look beyond their behaviors to how you can help them or support them. Your role is to be a coach. Challenge your child and implement a positive reward system for their efforts. Bored children display bad behaviors. Don’t live in denial that this is going to go away or that there is a quick fix. That said, accept this diagnosis as a personal challenge, and remember that Autism is not a death sentence. Do your research and invest in your child by finding meaningful therapies that support them. Remember, everyone has something.

Be consistent, keep things calm, have a plan and stick to it and give all the love you can. In the early years I feel the parents should be taught to give therapies and given training.

Find someone with good knowledge of the resources availible and where to apply for aid if needed

Best advice-use all the avenues your school district has to offer and meet the teachers regularly to make sure work is modified-stay ahead of the game so the child does not get frustrated with school work-positive reinforcements constantly constantly constantly!!! by school and parents.

Each child is an individual and therapies need to be tailored differently for each person. ABA is still the therapy of choice for children who need to gain skills to cope with life. Both Floortime and RDI can be excellent, but they take parent training and experience. Be careful about the hype that says that autism can be *cured*. This is a lifelong condition, but not a death sentence. Kids do progress and they do learn. Therapies are invaluable and the earlier you get them, the better.

Be patient, but stubborn. Look for the most effective treatments, but don't expect miracles.

Believe in your child  - don't believe in "doctors" and "experts" trying to tell you or sell you something.

My best advice for parents would be to be patient and remain hopeful. Keep trying new things until you find what works for you. Don't give up! I am still trying new things. I think the book by Ross Greene " The explosive child" is really helpful.

Find a local autism resource group as quickly as you can--these organizations can be very helpful in providing the names of doctors, therapists, psychologists, etc.

Seek professional help and keep seeking it until you get answers you are totally satisfied with and that make sense to you. Too many kids get pushed off by doctors/schools/insurance companies, etc... We moved when our son was 5 so we received input from professionals on each coast and feel our son benefited by the new review of his file and additional testing. Get as much therapy as you can get from schools/insurance and/or can afford out of pocket. Do not take what schools or doctors have to offer as absolutes. You must followup and be very aggressive in the diagnosis/treatment of your child. If you are not aggressive the school and insurance industries will do their best to pass you off and have you or others pay for services not caring if your child is left on the side of the road. I have yet to meet the parent of an autistic child who is not relentless in their pursuit of services for their child and I strongly believe that my wife's pursuit of his enrichment/entitlement was a huge benefit to where our son is today. I see a similar struggle with dear friends in New Jersey with a severely autistic son who battle the school board every year for services. They do not give up and it is just another test of your will for what's best for your child (unfortunately).

"Repeat, repeat, repeat…talk about everything and anything…I taught my son the alphabet by using floatable pieces in his bath and when he picked up one, I would say the letter and the sound,,,after 8 months, I was blowdrying my hair while he was in the bathe and I heard,,,mom..nine…mom..nine…When I looked he was holding up the number 9. I cried and cried…Never stop trying…There are days when you r exhausted and wish life could be different…have a good cry and get back on your feet again…Your child needs you,,,noone will do it better. Learn from the therapies and continue at home. Try new experiences even if u know a problem will arise…this is how they learn,,,buy a timer clock (www.timetimer.com) My life is so easy now…when he does chores, I set the clock for say 5 minutes and I talk him through it,,,he loves to mop, so a minute before the timer goes off, I prompt him and say…”when the clock goes ding, we r all finished”..works like a charm!!! Hope this was helpful " Never be negative as parents - don't blame yourself. Its the cards you have been dealt with in life, move on and accept the challenge life has given you. Don’t give up, try to keep the house as normal as possible., loose the therapist who are negative or who seem like they are inexperienced.

Start therapy with Floor Time and /or ABA immediately. Concentrate on communication and interactions above all else. It doesn't matter a bit if a child can recognize a thousand sight words and count if they cannot communciate their needs, wants and opinions.

Patience and hard work. Our daughter improved best by being repeatedly exposed to the things that were hardest for her. Our first reaction might have been to remove her form such situations but we made a conscious effort to exposure her to the things she had the most trouble with and made her tantrum the most and in all cases so far, she has gotten over her fears and improved (we took her to the presidential innauguration when she was 3 1/2). Do not be afraid of the label. It doesn't take away or add anything to your child. Your child is the same with or without the label. However, obtaining the label or having the diagnosis can you a better perspective and resources to educate and understand your child. Embrace the journey. (ex: You can't get treatment for cancer if you are not diagnosed with cancer.)

Keep him/her off drugs and involved in a variety of sports and activities that interest him/her.

Take care of yourself. Make time for yourself. And don't listen to conventional doctors!

Keep your relationship with your spouse as primary. Do not focus all your energies on the child to the detriment of the marriage. Two together will whether the storm and provide an area of safe harbor on the days of discouragement that will come. If there are siblings, lavish attention on their needs just as you place your energies to the needs of the affected child. Dream dreams for your child; don't ever lose hope but plan practically for the future.

You will be that child's advocate for the rest of their life, so you fight for all services, therapies, programs you can possibly get for that child and start early intervention as soon as your child is diagnosed. The earlier the better to start them on a program. If you need to hire an advocate or lawyer, then do so because it is your child and only you know him or her and what they need.

Immediately go to www.autism.com and spend as many hours as you can digesting the information. Then, one step at a time, act on what you've learned.