Diagnosing Autism Early
Ranked #6,642 in Parenting & Kids, #225,743 overall
Are you worried about your child's development?
There are many theories surrounding the sharp increase in the number of children diagnosed. I have written this lens to give parents who believe their child may have ASD a basic idea of how to proceed from here, what to expect and what kinds of choices you may face.
This certainly is not an all inclusive list, but is intended to be a starting point for you.
I will continue to add and update here. I am always looking for relevant lenses to feature, feel free to comment in my bio if you want me to consider one of your ASD related lenses! If I have forgotten anything, please feel free to add in the comments! I hope that this information makes the whole process easier for you!
Please keep in mind I am NOT a Doctor! This lens is not intended to treat, cure or diagnose. This is a general outline of steps and choices parents of children with developmental delays face.
Contents at a Glance
Do not be scared!!!!!
If your child gets diagnosed with Autism, they will still be themselves! They will have some therapy options to help with the challenges that already exist! Do not give up on them! There is an amazing and wonderful child who needs you to be strong for them and help them to fit in a bit better.
You tube: Autism Symptoms
by newsanchormom
Great lenses to explore!
Earlier is better!
The early years are when it is most likely for a child to receive the full benefit from therapies. It has been proven that children who receive early intervention have a better chance at reducing the symptoms.
How old was your child (or your friend or family member's child) when they were diagnosed?
Who do you talk to?
- Try your child's primary doctor first. If they advise the "wait and see approach" , I strongly reccommend seeking a second opinion. If they are taking your concerns seriously, they will likely give you questionaires to fill out and hopefully a referral to either a pediatric developmentalist, child psychologist or psychiatrist or a pediatric neurologist. Sometimes they will initiate the therapies before completing the full evaluation- this way they can use input from the Therapists as part of their diagnostic process. A great pediatrician will initiate everything so quickly, that it makes your head spin- do not feel overwhelmed, you can always call their office if you need advice or phone numbers for therapies etc.
- If your child is already in school, speak to the school psychologist. Explain exactly what you are worried about. You can request an ARD meeting in which you set up a Full and Individualized Evaluation- this will help get things moving although the whole process may take upwards of 60 days.
- Local advocacy agencies. If your child's doctor and they school are non-responsive to your concerns and do not give a satisfactory explanation as to why, consider advocacy. This stage of ASD is especially challenging. Advocates have been through it before and may be able to assist you in finding providers who are more likely to listen to you.
- A child psychologist or psychiatrist. They are able to help diagnose ASD- they are a wonderful resource and are often overlooked.
What provider did you or will you start with?
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slotowngal Feb 14, 2011 @ 4:53 am | delete
- We started with a Phd psychologist and then requested testing from our school district. When they heard the possibility of ASD had been raised, they put our son at the top of the testing list. They also suggested we go privately for a more complete diagnosis, and we chose to take our son to Kennedy Krieger Institute in Baltimore MD. We are very glad we pursued testing when we did.
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sidther
Feb 21, 2011 @ 9:29 pm | delete
- Kennedy Krieger is wonderful! Now they also have IAN (Interactive Autism Network) to further expand research! Great that you followed your instincts, 19 years ago it was not that common to have access to such great facilities or even to be diagnosed at 4 years old! You are one of the parents who helped to pave the way for future generations to have more options! Thank you and your family!
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Your child should have evaluations from:
A Primary doctor / pediatrician
Developmentalist, Psychologist or Pediatric Neurologist
Speech Therapist
Occupational Therapist
Dietician
Physical Therapist
Behaviorist
Allergist ***
Pediatric GI Specialist ***
***if indicated
Were your concerns immediately taken seriously?
If you suspect your child has a developmental problem...
Make a binder.
Make an appointment with your child's doctor.
Consider bringing a friend to the Appointment
Keep copies of everything for your binder.
Check out your insurance coverage- know what you can and can not get and how to request things.
Start individual evals
Find support groups
Keep Organized
It will make the entire process easier!
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Helpful Reading about Autism
With so much confusion out there about autism, you will need to do lots of research.
Try to control how hard you "demand a cure"
Please try to remember that if you start obsessing about "miracle cures", it may hurt your child's feelings. Sticking to therapies that help them bring out more of themselves is the best way to look at it.
If you say you want to cure people with ASD it sounds like you are asking to "cure them of their own personality".-
What are these "Therapies"
- Speech Therapy : For the younger kids, this will (after the first few getting to know you sessions) be more like playtime. It really is very in depth, but to make the kids want to try, it must be fun! The therapist may give you "homework" such as modeling and recasting. Once you get into the habit, you will be helping your child's speech without even knowing it between sessions!
- Occupational Therapy : No, not helping them draft a resume.... You might be surprised with your child's evaluation results. An OT can find minute details that are often overlooked that effect a child's ability to perform daily functions well as well as school work! There is a lot of focus on fine motor skills, some will offer Sensory Integration (read more about that farther down).
- Physical Therapy : Most people are quite sure that they can tell whether or not their child needs this, get the eval anyway. There can be subtle clues that your child is having a bit more difficulty than they should, which if left untreated may create more challenges in the future.
- Floortime : Interactive "play" between therapist and child. Can be used with social issues, speech, OT, "academics" and SID. This was one of the best methods for my son. He was very much more receptive to this technique than ABA, he was very comfortable with his therapist- although not comfortable enough to refuse participation! He was less fatigued after floortime sessions because it was less like work to him- even though he was working probably a bit harder!
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ABA : Currently considered the Gold Standard. Applied Behavioral Analysis. Very effective method of stopping problem behaviors. The therapist analyses why the child is doing what they do and then "manipulates" them into the desired behavior.
I personally don't like it. To me it is reminiscent of Pavlov's dogs. However it is extremely effective at stopping unwanted behaviors and replacing them with desired behaviors. We did it for 8 months, it was effective, however cutie was very unhappy and his personality went from very strong and outgoing, to extreme introvert. I also question whether any of his behaviors warranted it's use. He is back to himself now, but it took a few years to bring him back. We found that Sensory Integration Therapy was the best solution for his few behavioral issues. -
Sensory Integration Therapy : A definite must try! Many kids with ASD have sensory problems as well. You do need to be very careful when choosing a provider though. It is not as widely accepted as it should be yet, although it is getting there. If you are looking for a SIT therapist, check that they are licensed OTs, have a strong background in Neurobiology, and that they do more than just de-sensitization!
Cutie has had great success with SIT. He does Vestibular and proprioceptive stimulation excercises daily and we follow the Wilbarger protocol. He has not had ANY tantrums since we began this therapy 2 years ago, head banging is gone and he is much happier!- He still does a fair amount of hand flapping, but in the grand scheme, that does not matter so much! - I consider my child's tutor to be one of his therapies: he does not need the academic help, however he needs to understand how and when to ask and answer questions with teachers. His tutor mostly helps him with that!
What therapy helped your child the most?
If you do not have a child on the spectrum, feel free to vote based on experiences with friends or family members who have a child on the spectrum
Regardless of your personal views on Alternative treatments, you should always include your child's doctor in ALL aspects of their therapy and care. Your child's doctor may have important safety information to help make sure that it is done by a reputable provider and that risks are minimized.
Alternative Therapies
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Gluten/ Casein Free diets : Not widely accepted as a treatment for Autism- However.... Many children with ASD have additional medical problems such as celiac's disease or gluten and/ or casein allergies/ hypersensitivities. Please discuss this with your child's doctor before attempting and ask for a dietician. While eliminating gluten and/or casein may not be dangerous.... eliminating the foods that they are in may be. Different foods contain different nutrients. If you eliminate such a vast amount of choices from your child's diet it is important to be sure that they are getting those nutrients elsewhere. A dietician can help with that! Also these diets can be challenging and expensive. There is a good chance that your child will not respond- see if your doc is willing to run labs first- if your child has no allergy, sensitivity or markers for celiac, then there is a good chance that this will not help.
Check out this featured lens for advice and recipes!
http://www.squidoo.com/gluten-shmuten - HBOT : Hyperbaric Oxygen Therapy : A child with ASD is place in a hyperbaric chamber. The chambers are traditionally used to treat illnesses such as "The Bends" (when a diver surfaces too quickly causing nitrogen bubbles in the blood due to the rapid decrease of pressure). Some people report improvement with this therapy. Most studies indicate that this treatment is too risky with little to no benefit. I do not recommend it as it is frequently given outside of a hospital setting and often these clinics do not monitor blood work or have adequate safety procedures in place.
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Vitamins and Supplements: If you are considering this, please use caution, a doctor and a dietician. Do not make any changes to the routine without discussing it with them first. Some vitamins are fat soluble- so if you overdose, it is much more difficult for your body to eliminate them, this can be very dangerous. Also, some of the water soluble vitamins in high enough doses can cause serious side effects- including neurological side effects that mimic worsening symptoms of ASD. Please do not try anything Herbal without discussing it with the doctor either. Herbals can be very dangerous when combined with the wrong food, medication or vitamins- when they work they are wonderful, be sure to do it safely.
We used baby formula with chocolate syrup as a supplement for cutie- mostly because with his limited diet we knew he was missing a lot of nutrients- It worked wonderfully- the dietician figured out the correct amount for us. We did get a few funny looks though! -
Chelation therapy: In my opinion- don't. Unless you are in the hospital with in house labs showing what metal is the problem and how high it is. Some of the alternative providers have admitted to drawing blood and never sending it in. I considered trying it through one provider a long time ago until she said "we don't need to draw blood, I know he has mercury poisoning". Chelation is serious and should not be taken lightly.
By the way, I then told my son's doc about this other doctor, he ran the blood work and there was no heavy metal toxicity- in fact he had lower amounts than the general population.... Chelation could have been fatal. - Shock therapy- I should not have to tell you..... In some countries this is still used. If you live in one of those countries... don't do this!
If you use any Alternative Therapies
Tell your child's doctor right away if your child exhibits ANY changes- good or bad. ASD inhibits the ability for them to communicate. Sometimes what you may see as an improvement may actually be a problem.
ie: my son is extremely active. He was receiving b6 and B-3 which should have been "harmless".
He became less active- turns out it was an overdose and he was feeling sick. He gave us no other indications until he began showing neurological symptoms. We stopped giving it, luckily he is OK.
Help your child communicate!
Genetic Counseling and Testing
I strongly recommend asking for this! Current recommendations are that any child with a diagnosis of ASD (and often those with PDD-NOS) should receive genetic testing. Most never are tested- it is a recommendation, not a rule. The problem until now is that many do not have Fragile-x and it is challenging to figure out which other test to try. There are many genetic factors that are testable that are causes of certain types of ASD and many that are associated with ASD in general.
Recently, Lineagen announced the launch of their Opening Autism and First Step Dx programs. I do not know them, they do not pay me to refer you.... I have checked them out though.... They check the entire genome as well as the Frag-x test and counseling! Go check out the site! They will be available in my area in March, I have already "announced" to the doc and insurance company that Cutie will be getting this test. They have agreed. I will post an update when we get the test, and again when we get the results. I hope that you will consider doing this, not only could it provide you with answers, but if more people with ASD got this type of test, we would have a lot more answers.
Have you tried Genetic Counseling or Testing?
Tell us about it!!!!
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sousababy
Sep 9, 2011 @ 7:50 pm | delete
- Came by to google +1 this gem. Take good care, Rose
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Blessedmombygrace
May 31, 2011 @ 1:48 pm | delete
- Interesting lens. My children do not have autism, but we have good friends and cousins whose children do. This was a very informative lens. You may want to include additional options in your polls for readers who do not have autistic children, but are still interested in learning more. Blessings to you.
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sidther
May 31, 2011 @ 2:50 pm | delete
- Thanks for your input! I have modified the polls to make them more inclusive!
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sousababy
May 29, 2011 @ 11:35 pm | delete
- Great to see you posting this on Amplify!
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sousababy
May 12, 2011 @ 8:22 pm | delete
- Came back to admire all the work you've presented here and to showcase this in the right sidebar of my Bio page. Hope you, hubby and Cutie are together as often as possible. Love always, Rose
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ajgodinho Mar 13, 2011 @ 5:28 pm | delete
- You've put in a lot of work into this lens and it's become a great resource for parents with children who could potentially be diagnosed with autism. Well done!
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ChrisDay
Feb 17, 2011 @ 11:21 pm | delete
- Invaluable guidance and support for those faced with this challenge.
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hayleylou
Feb 14, 2011 @ 10:59 pm | delete
- Great resource for parents of Autistic children. **Blessed** by the new Parenting and Kids Squid Angel and will be featured on my Angel Blessings lens, coming soon :)
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- We have a 23 year old son with Autism who was diagnosed at age 4. This is a wonderful lens! Your information would have been a huge help to me all those years ago when I was first faced with 'what is autism and how can I help my child'. Having the internet is a blessing to parents faced with it today, and I want to thank you for taking the time to put together a quality lens on this topic. SquidAngel blessed, and thank you!
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sousababy
Feb 12, 2011 @ 1:34 pm | delete
- Lensrolled to my: Squidoo people with a good heart
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Insurance and ASD
My head hurts just thinking about this topic. Some insurance is great, others will make you jump through hoops. Please, do not hastily get angry and cancel your coverage just because your insurance company is being difficult- you may have a hard time getting an AFFORDABLE good plan once there is a diagnosis. I was recently quoted $850/month because ASD is a pre-existing condition and my son would not be covered for any ASD services for the first 12 months. After 12 months he would receive 70/30 coverage. And this was a good offer compared to others... luckily, his current plan was in place before his diagnosis 5 1/2 years ago- but it does not cover SIT.
You can not manage this emotionally. Take time, research, weigh options. Do not give any 'gut reaction' responses when dealing with insurance companies. If necessary, send a well written letter to a senator or congressperson- that usually irritates the insurance in to helping out "as a favor to you".
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How is your insurance company handling this?
Table of Contents
- You tube: Autism Symptoms
- Great lenses to explore!
- Earlier is better!
- How old was your child (or your friend or family member's child) when they were diagnosed?
- Who do you talk to?
- What provider did you or will you start with?
- Were your concerns immediately taken seriously?
- If you suspect your child has a developmental problem...
- Keep Organized
- Helpful Reading about Autism
- Try to control how hard you "demand a cure"
- What are these "Therapies"
- What therapy helped your child the most?
- Alternative Therapies
- Have you tried any Alternative Therapies?
- If you use any Alternative Therapies
- Help your child communicate!
- Genetic Counseling and Testing
- Lineagen now offers "Opening Autism" and "First Step Dx" !!!!
- Have you tried Genetic Counseling or Testing?
- Development Binder
- P.E.C.S
- Follow me on Twitter!
- Insurance and ASD
- Sidther on Zazzle
- Don't forget to bookmark this page!
- How is your insurance company handling this?
- Autism lenses
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