My 21 month old son "most surely autistic"

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I am Lori. *waves* xD

I am 27. I have 3 boys. 9, 5, and 21 months.

I am married to my soul mate who is currently deployed to Iraq and due home in December.

At 6-8 months my son, Rhyse (Reese) Spoke words, mama, dada, baba, bye bye, stop. Now at 21 months the only word he has left is mama. He never "babbled" until about 3 months ago.

At his 12 month well baby i talked to his pediatrician about how he had seem to have forgotten words. He didn't respond to me when i called him and I swore he had a hearing problem. He assured me that he was fine and that if he still was not talking by 18 months to bring him back and they would refer him to a ENT.

Due to certain circumstances I got him in at 21 months. Today. Thinking I would be taking him for possible tubes in the ears we went to the doctor today with high hopes. Even took my 5 year old. I told her the reason we came, she asked a series of questions. I answered honestly. I thought milestone stuff maybe? Then she goes on to try to play with him and talk to him and he was not interested. She observed as she typed into the computer asking more questions. A few quiet moments later she tells me she is enrolling him into speech therapy, and referring him to EDIS, Education and Development Intervention Services. Continues to tell me "he is most surely autistic." I was speechless. On the way out she told me good luck and to have a nice day.

WHAT DO I DO NOW?! Can she really make these "calls" from one 45 minute visit? How long will it take to find out? And what can i do for him? I have no knowledge of autism other than what i have read tonight. Which is a lot and I am quite overwhelmed. since the doctor told me this a lot of the things he does is "clicking." I just have no idea what I am supposed to do now. I plan to go to these appointments for speech therapy and to EDIS but we must wait for the referral to come in the mail to be able to schedule an appt with them both. Can someone just give me some advice? What do I look for? How long does this take? what can i do for him? and where do I go next????

sorry for the long post but I am VERY lost.

Thank you so much in advance.

Lori

Well, the first thing is to calm down. Take a breath. No, she cannot tell definitively in 45 minutes that your son has autism. I don't know what other things you might have told her but the few things you mention do not necessarily add up to surely autism.

My daughter had no words or babbles until 2 and a half. And today she is a 7 year old that in some situations no one can tell there is any differences in her. She is bright and happy and engaging. As a toddler she lacked these characteristics. I tell you this to show you what your son exhibits now is not who he will always be-there is growth.

Play with him as much as you can on his level. Engage him as much as you can. Do not worry about the speech at 21 months. IMO that is too young to get speech therapy involved but I know they sometimes do get involved that young.

Have the EDIS social worker do some evaluating. See what they say. Do not start to find the "autistic-ness" of everything he does. Try to just be a mom and engage him. You will know more after an eval. Until then, try not to get carried off with the possibilities.

If it is Autism, it is not the end of the world. You can educate yourself on what works with him. Right now work on setting limits, enforcing boundaries, and loving him unconditionally. I am sorry the ENT dropped such a bomb on you today, that must be very tough. But it takes very specialized training and education, not to mention specific experience to diagnose ASD.

Welcome to WP. Read all you can. I hope that you get some answers soon.

I would consider AS a "possibility" at this point, but not a certainty. No, it cannot be diagnosed from one 45 minute session. But, since the experts seem to feel early intervention is absolutely essential, at least for certain types of children on the spectrum, they are on high alert for anything that "might" be autism and will default to moving forward with the services. With the loss of speech, your child fits the pattern for the type they want in early intervention, assuming the child really is autistic.

Early intervention should involve things that will help your child if the preliminary diagnosis is correct, and that will not harm your child should it prove not to be correct. As long as you doing interventions like speech and occupational therapy, and as long as these don't prove stressful to your child, you will be taking a precautionary stance.

What to do? Don't panic! You have no idea, really, if your child is on the spectrum or, if he is, where on the spectrum. Even then, AS children are delightful in their own unique way, and you will still have many ways to love and enjoy your child should it turn out he is autistic. You'll need a slightly different rule book for parenting him, but once you have that, it should be fine.

One of our adult AS posters wrote a book for parents, and it has a lot of good information. It is available for free download here: http://www.asdstuff.com/

Those seem to be early signs of autism but early signs of autism aren't that reliable. A diagnosis of autism shouldn't occur before the age of three years old. There's nothing you should be doing now but continue what you have been doing and see how he grows up, and love him the way he is.

Google and take the MCHAT test, it picked our sons Autism conclusively, he aced it in fact. Then we got a very thorough and professional assessment through the Govt services (A team of combined Peadiatric, Psych and Speech professionals) but it only told us what we already knew by then.

First of all - Welcome!
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1. Doctor should have given you a bit more information on Autism when she told you "maybe..."
2. Doctor DID say "might" - it's a possibility at this point, not a diagnosis.
3. If it turns out to be accurate, you've caught it early and have time and direction to arrange therapies.
4. You found the right website. Many of the others out there are negative about autism, peopled by frantic advice and ideas, and can be somewhat scary and misleading. This place, in my experience, is not only peopled by Autistics and Aspergians (who will provide you lots of inside information), but also by parents who've done well wtih their own ASD kids and can give you much experienced advice.. in a calm, helpful manner.
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45 minutes of structured testing can indicate the possibility of autism. It doesn't define it for sure.
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It still could be ears or eyes. Both should be tested at some point.
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Food allergy tests are a consideration too. Sometimes, a body under assault by allergens can shut down or slow down other functions while it deals with the ongoing allergen issues.
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It could be other learning issues or perception issues.
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If it is autism, then you can rejoice in the fact that you have a framework.
People. Planning. Guiding. Structuring. Interpreting. Helping. Cheering. Striving. Together.

I'm so sorry you got hit with this bomb when you obviously have a full plate otherwise! I will add to everyone else's statements: it would be hard to say from just one visit, but even if it is true, it isn't as scary as the media makes it out to be.

There are special family support services for the military, and you should have medical insurance covered under Tricare, right? I would take full advantage of those services, as they are there for just exactly this time in your life and for these kinds of situations.

Hi There and welcome- I don't have anything great to add. I will say that I sure wish that I had been looking down the ASD path first rather than in the multitude of different directions we started with. My poor DS has been subjeted to so many different meds and Drs. We are having the best success with providing the supports that help most kids on the spectrum and then treating whatever remains. It took us a long time to get here - I wish we found it sooner.

thanks for all the advice and kind words.

i have to wait for the referrels to speech therapy and EDIS to come in the mail before we can move forward. so i am just gonna live normally until then. we will see. <3 thanks again!

If you child is indeed autistic you have a very long and difficult road ahead of you. But don't fret. You will make it through and your child will be OK. The number one thing to remember is never give up. When a doctor, teacher, or therapist says 'no' or gives you the run around about a question, concern or treatment, push harder. Do all your own research. Double check everything they tell you. Ask hard questions. Don't discout therapies because they are not offered or approved. Research, research, research.

I know a lot of people (here and elsewhere) don't like Jenny McCarthy, but I strongly suggest you read her books about her struggles going through autism with her son, Ethan. You can take what you like out of the book and leave the rest. If nothing else, you will know that you are not alone, have an idea of what may be ahead of you, and have a list of good resources.

I suggest you find a DAN! doctor ASAP and use him as your child's pediatritian. DAN! stands for Defeat Autism Now! This is a general pediatrician that is part of the DAN! organization and has a good understanding of autism and will usually offer, prescribe, and condone a wider array of treatment options.

I do believe that autism is highly treatable in MOST cases. I believe that once you find the proper combination of medications and therapies for YOUR child, your child can lead a nearly normal and happy life. It might be a different normal than others but they can be functional and happy. I also believe that you can learn to communicate with your child and your child can learn to communicate with you. It is just more difficult than it is for other parents and children. But it can be done.

I strongly suggest, again, that you research as much as possible. I strongly recommend trying to find out if your son has any allergies, colon or absorption problems. I recommend researching and starting a GFCF diet ASAP. It is unclear if certain absorption problems are related directly or indirectly to autism, but it is well known that these types of issues are very often comorbid. This is not a cure. It is treatment of one symptom. Some parents see a miraculous change with the diet, while others seen no change at all.

Get as much support as you can. Have a friend or family member go to the appointments with you. Someone you trust is smart and will pay attention to the doctors. That way if there is ever an appt. you cannot go to due to other committments you have someone that you trust and that will know what to listen for or ask that can take your child for the doc for you. The doc appointments get extremely overwhelming, whether you work outside the home or not.

Never give up. Your child will be OK if you fight hard.

You know as an aside, everytime I read about youths drinking to excess and fighting, and crashing cars and paralyzing and killing themselves, and generally doing the utmost stupid things due to peer pressure, I actually think to myself no matter what else, I'm glad my son isn't going to be a moron like that!

I would caution the DAN! doctor advice; those are the same ones who have advocated chelation, which dangerous and questionable. But, they did luck out with the diet connection, being the early advocates for GFCF (although the original theories behind that connection have now been discredited). Observant families have since been able to split hairs much more intelligently on the GFCF theories, because obviously a child that has food allergies and doesn't feel well is going to withdraw from the world. Funny how it took a drastic diet recommendation for parents to hone in on that, but so it was. What families on forums like this one will now tell you is that GFCF isn't the real answer; it is finding your child's unique food sensitivities that generates improvement (in my son's case, eliminating soy made a world of difference, and thankfully we lucked onto that knowledge long before we'd heard of anything like GFCF, which would have actually had us INCREASING his soy intake - oooopppsss!). The DAN! protocol is still evolving, but there is significant profit motive involved in a doctor hanging out that shingle, and virtually no scientific studies on the protocol at all. So ... skepticism and caution are warranted. Which doesn't mean there is no value in that path ... just be careful.

I'm also one of the ones who thinks Jenny McCarthy's books are full of misinformation ... but, heck, that is going to happen. We are all working on the frontier. No one has the proof yet, just lots of theories. My main caution is to remember that your child will benefit most from YOU getting to understand HIM, and trying to see life through his eyes. That would apply no matter what diagnosis he eventually does, or does not get. So don't let anyone panic you into investments of time and dollars that interfere with the number 1 thing he needs: mom.

Just wanted to give you my input .. I dont know much , I have 5 children one who has been diagnosed in the autism spectrum.. having said that I also have a child that was mainly interested in doing physical things and couldnt be bothered with talking until he was almost 2 and a half years old. Then He wouldnt shut up lol. I think you need to get another opinion definitely and dont compare kids.. they are all so different and some just arent interested in things until later. If your child is autistic its just a different way that he sees things and there is so much knowledge out there now. So either way he will be fine.. but I would get a second opinion. And realize kids that young learn at thier own leisure .. it drives us crazy but they are busy exploring stuff and sometimes take a while. I wish you the best of luck

My son was diagnosed at a very early age (2.5), and he had LOTS of words. What other types of behaviors or concerns do you have about your son? Anyway, 45 minutes is too short of a time, especially at this age to diagnose. The developmental pediatrician that diagnosed our son had us fill out stacks of questionnaires about our son's behavior and development.

My advice to you would be to definitely take him to the speech and early intervention appointments. But in the meantime, I would just do everything I could to interact and engage with your son as much as possible. Try to get him interested in things or follow his lead as to what he is interested in and talk and engage with him on that level. You could start with little picture books for babies and show him pictures and tell him what they are. Don't stop talking to him. Try to get him to show you what he wants or start teaching him some sign language.

Personally, I am not against the GFCF diet, but if your son is not experiencing bowel issues, it may have no affect. I think speech therapy and perhaps occupational therapy may help more. I have not changed my son's diet at all, and he is 5 now and is speaking in full sentences that make sense (most of the time) My son has been in early intervention and special needs programs through the public school since he was 18 mos. old, and he is progressing very nicely.

As far as DAN doctors, I don't really know much about them. I am sure they do have something to offer, but I never pursued using one since they are SO expensive, and they don't take insurance.

For right now, I would just try to remain calm, and just work with your son and keep him engaged until you get a diagnosis. I would be hesitant to start anything until you know for sure whether your son is autistic.
Also, the reading and research is the best way to try and figure out your son!

Best of luck to you and your son!

Just wanted to point out that the DAN! doctors are regular pediatricians that are part of the DAN! organization, which just means they are active in finding treatment and keep up on autism education. They are hard to find.

Also, as far as Jenny McCarthy's books, like I said, take what you can and leave the rest. They are very emotional. Reading about someone else's journey can be very theraputic. I believe there is a lot of misperception about her books. They are the story of a mother trying to help her child, nothing more, nothing less. They are not full of funky advice, but she admitedly is one of the parents that has tried every therapy (traditional and non) for her child. There are therapies she declined due to safety concerns as well. At the end of one of the books she lists resources for nearly everything related to autism, whatever therapy, organization, route that you want to go through (current as of 2007 I believe). Her book is the diary of a mother of a child with autism. Anyone who says it is anything else has not read it.