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Autism: how and where to get help

Dealing With a New Diagnosis

By Amalah

Hi Amy

We recently found out our older son has ASD. I believe the older PDD, Aspergers diagnosis has gone away with DSM 5 so his diagnosis is just Autism Spectrum Disorder (ASD). He turns 3 next month and is a delightful little guy. We’ve always had our doubts since he did not start talking until he was 20 months old and there were red flags here and there like toe walking, teeth grinding and sleep issues but the diagnosis has been huge blow to us. He is a very smart boy who can already read and write, knows his letters, colors, shapes, numbers and all that good stuff, in fact extremely smart for his age but his social/emotional growth is way behind and he shuts down completely if he senses a stranger in the vicinity. His communication is also not age appropriate. He goes to daycare right now and has been since he was 15 months old but hasn’t talked or played with any of his peers ever. He prefers to stay alone, read, and color alone. Even at home when we talk to him, ask him how his day was he just stares blankly at us.

We have started him with speech therapy and some behavioral therapy (ABA) once a week but I would like to understand what more I can do to help him. Is there any food-related changes that I should make, put him on a special diet? Should I give him extra vitamins. What should I be looking forward to when it comes to getting him into preschool and how should I do that? Are there things I should look-out for when getting him into a school? Is there something I can do at home?

I did not grow up in the US so I do not know what my options are.

I know my questions are very generic but I honestly do not know where to start. I also know that early intervention is the best so I want to give him every chance he deserves to have a regular childhood. I feel helpless not knowing how to help him.

Any advice that you can give me will help. I apologize if I sound ignorant but that is what I am when it comes to meeting his special needs.

Thanks
ASD Mom

No, you’re not ignorant; you’re basically going through what every special needs parents goes through in the wake of a diagnosis: The feeling like you’ve just been pushed off a cliff. And then you land in the ocean and maybe manage to cobble a small raft together with some nearby floating twigs and then you’re like, CRAP NOW WHAT.

Trust me, I’ve gotten emails from special education teachers, occupational and speech therapists, even PEDIATRICIANS who are reeling in the wake of their child’s diagnosis, completely unsure of what to do next. This is where we all start, more or less.

Unfortunately, I’m not going to be able to be as specific as I should be here, since I don’t know your geographic details (not that knowing would make a huge difference, unless you lived in my county, and also right down the street). Because the options available to you will vary greatly by your state, county and school district. TYPICALLY, county Early Intervention services hand kids over to the school district after their third birthday. Your school district’s website should have information about preschool offerings and the process for getting your child “identified” and qualified for free services. (For many districts, you’ll want to find the number for “Child Find” and information on the “Preschool Education Program” [PEP], but this isn’t universal.) Your son’s therapists and pediatricians should ABSOLUTELY be able to inform you about any county/district offerings your son might benefit from. From what you describe he sounds like a PERFECT candidate for a PEP-like setting. (Which is where my son spent two years of preschool, with one year spent doing the public [freeeeee!] option in the morning and a private special needs program in the afternoon. I won’t lie: The private program cost a FORTUNE. But it was worth every penny as it focused heavily on the social/behavioral issues and also taught ME a ton about how to help my son.) You can also search your area for “social skills groups,” which are like mini-preschool, focused on getting kids like your son to interact with peers and function in a classroom setting, but usually only meet weekly or for a shorter time period.

As for all the “but WHAT ELSE” questions, I’m going to urge you to take a deep breath and slow your roll, for now. Your son is freshly diagnosed with a large catch-all diagnosis and has just started two very intense therapy regimens. Give him time to adapt and respond (or not respond) and resist the urge to just start throwing everything at the wall to see what sticks. Special diets should be governed by your child’s behavior (i.e. he eats Y and you notice X behavior seems magnified), but I wouldn’t overlap an elimination diet right when a new therapy is starting: You’re likely to mix up just WHERE the improvement is coming from. Give him a few months of therapy and let him settle in. Then you can start investigating elimination diets like Feingold or see what happens if you cut artificial food dyes or preservatives out of his diet. Timing the elimination (and/or experimental reintroduction) when your son is relatively “okay” will give you a better picture of what’s ACTUALLY food-related and what’s just a placebo-like coincidence.

If you want to add *something*, we had good experiences with a small dose of fish oil during my son’s speech therapy — though as always, hard to say if it was just the timing rather than the combination. There are also options like SpeechNutrients and no end of supplements and herbal blends aimed at special needs kids — I’ve tried a ton of them at various points of desperation and have found that some do seem to provide a small boost, albeit only temporary, and perhaps imaginary. What’s helped my son the MOST is helping him overcome texture issues and picky eating and getting more variety into his diet, rather than depending on pricey supplements. Fish and green vegetables rather than a menu of nothing but processed carbs, for example.

We never did ABA so I’m hesitant to ramble on with further book and product recommendations since I believe there’s some direct conflict/contradiction between the ABA approach and some of the stuff we did. So if you like your therapist, lean in on them. Ask for books and papers and at-home activity sheets and start educating yourself. Both our county and the private treatment center we used regularly offered evening events for parents with talks/education by experts in Autism, ADHD, sensory problems, etc. Take it slow: You don’t need to become an expert on ASD within six months. You just need to become an expert on your particular child, and good news! YOU ALREADY ARE.

Which is an important thing to remember, because here’s the icky part: Some school districts have really lousy services. Some are too underfunded to help every smart-but-socially awkward borderline kid out there, or are just a nightmare of red tape and paperwork. Other districts are fantastic, but then you can still get bad luck with a burned-out caseworker/educator who quibbles over your kid’s diagnosis and thinks he’s just “stubborn” or a “spoiled brat.” Some private therapists and centers can likewise be a bad fit or make calls you’re not comfortable with. And this is when you need to learn how to be your child’s advocate and walk a line of being part of a team (i.e. don’t go into meetings ready to fight with fists already lit on fire)…while taking care to also not be the team’s resident doormat who is too timid to disagree with the “experts.” Because you ARE an expert. No one there knows your child like you do, and that MATTERS. Hugely. And when you look at it that way, you couldn’t possibly be father away from being “ignorant.” GO GET ‘EM, MAMA.

Amalah
About the Author

Amy Corbett Storch

Amalah

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Ama...

Amalah is a pseudonym of Amy Corbett Storch. She is the author of the Advice Smackdown and Bounce Back. You can follow Amy’s daily mothering adventures at Amalah. Also, it’s pronounced AIM-ah-lah.

If there is a question you would like answered on the Advice Smackdown, please submit it to amyadvice@gmail.com.

Amy also documented her second pregnancy (with Ezra) in our wildly popular Weekly Pregnancy Calendar, Zero to Forty.

Amy is mother to rising first-grader Noah, preschooler Ezra, and toddler Ike.

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