advert

Dealing With a New Diagnosis

Sep27

by

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.

About the author

Amalah

http://www.amalah.com
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.


Subscribe to posts by Amalah

9 Responses to “Dealing With a New Diagnosis”

  1. hp Sep 27 at 10:26 pm Reply Reply

    Hi ASD Mom, our son sounds roughly similar (ASD diagnosis, precocious on letters/numbers).

    Our son’s social delays, tantrums, etc. seemed really scary about a year ago when he was 3, and now that he’s almost 4, he’s still behind – but he’s doing amazing and he’s been learning super quickly. I bet your son will too!

    One resource is http://myautismteam.com where I have seen some people get good answers though it is hit and miss.

    For kids who are early readers, you can find some stuff under the search term “hyperlexia” – try the Hyperlex Yahoo group at http://groups.yahoo.com/neo/groups/Hyperlex/info (most participants in the group are parents of kids with ASD diagnosis and precocious reading). Here is another thread: http://giftedissues.davidsongifted.org/BB/ubbthreads.php/topics/163321/1.html and a post with links at http://intellectualizing.net/2013/09/24/an-annotated-selected-hyperlexia-bibliography/

    Even though DSM-5 just has “ASD” now, reading the Asperger’s/HFA books may be the place to go. If you read one “classic autism” book and one “Asperger’s” book you’ll probably quickly get a sense of which one is closest, or maybe your son is in between! Two book suggestions: Thinking Person’s Guide to Autism and Tony Attwood’s Complete Guide to Asperger’s. Oh, look at asperkids.com, Jennifer O’Toole is quite the marketing machine but the nice thing is that she’s relentlessly positive about autism.

    Our son has had about 20 hours/week ABA for about 4 months now and it has made an enormous difference. Because he is very good at learning, he “gets it” quickly when explicitly taught. Just 4 months of daily practice have him able to play with a friend already – not perfectly but he can start to participate. Before he would just refuse to get near other kids, or best case have NO idea what to do with them.

    I think he’d probably have gotten there on his own, but maybe much later by a year or two or three. At that point he’d be really behind on social interaction, anxious, self-conscious, and it’d be so much harder. Reaching the recent milestone of awkwardly playing with a friend was very exciting for us and he had so much fun too.

    In about 30-ish states now private insurance covers ABA so it may be feasible.

    I think various things besides ABA could work, but practicing a lot on a lot of different skills is important.
    For our son at least, he is super smart and affectionate and AWESOME, but it’s been a ton of daily practice for him to nail down enough different social tools to be able to play with peers.

    The recommendation for anywhere on the spectrum from the Committee on Educational Interventions for Children with Autism for example is “a minimum of 25 hours a week, 12 months a year” and “each child must receive sufficient individualized attention on a daily basis.” I don’t think 25 is magic, but the point is, it just takes time and work.

    Remember that autism is a trait, not a single disease. It is likely caused by at least dozens if not hundreds of different things (think fever or intellectual disability or giftedness), though most – but not all – of said things are likely genes. So you have to try to figure out your individual child. If another child has autism caused by such-and-such or helped by such-and-such, that may be totally irrelevant.

    With our son the therapists don’t use food rewards and things like that. To keep him motivated they will swing him around or do something funny or let him do a desired activity, that kind of thing. And they never use punishment. So he has a lot of fun with them.

    Many kids with autism do GREAT – Daryl Hannah just came out this week, she was diagnosed back when you had to have pretty severe symptoms to be diagnosed – there’s Temple Grandin, all kinds of people in the tech industry (read this looking for autism signs: http://www.businessinsider.com/marissa-mayer-biography-2013-8?op=1 ), plenty of scientists and musicians and so forth. It sounds like your son has lots of strengths so build on them & I know he will rock it.

    Good luck to your family.

  2. MamaBerry Sep 28 at 12:48 am Reply Reply

    Dear ASD Mom,

    Let me first say, I stumbled upon this blog by ‘accident’ from a COMPLETELY unrelated Pin on Pinterest. I really know nothing more about what appears to be an amazingly informed mom other than this posting here :)

    All of that being said, I wanted to extend my reassurance that what Amy has offered you by way of advice is very sound. I noticed at one-year old that something was ‘not right’ for lack of better terms with our now nearly 9 year old DD. She wouldn’t look others in the face, she wouldn’t speak when spoken to, unless she REALLY knew you. She wouldn’t get involved in ANY new sensation (think clothes, dirt, sounds, play – all the things I am sure you are experiencing). All that said to let you know, I get where you are coming from. Our DD was diagnosed with Sensory Integration Disorder finally at 5 and our adventure started… Much the same symptoms as Aspergars, but she was not quite on the Spectrum. One Dr. said no, one said yes… Either way, she’s ours, we love her and our adventure is ongoing…

    With those ‘credentials’ set, I offer you this: Breathe… I know that is easier said than done, trust me… but breathe. This is your LIFE. It is not going to get ‘fixed’ as some like to call it by anxiety and grasping. You are in this for the long haul. Therapy is an amazing place to start. We started with OT and Mental Heath Therapy. MHT was not all that successful, since she doesn’t interact other than in an infantile way. Oh well, we tried and maybe in it’s own way it took her out of her safe zone just enough to encourage growth. OT was amazing. After a while of therapy – maybe 2 months? We started some elimination methods. We DID find a major trigger for her. Despite organic foods, she still had a MAJOR sensory reaction. In fact both therapists dropped her in one week of stopping! It was that major!! But, as Amy said, you must stick with one thing for a while. Find if they respond, THEN try another ONE small thing. See if it works… etc. Again, think long haul.

    I am sorry for being winded. But my words are to reassure you, please know your emotions are NOT unfounded. I spent many a guilty nights crying “what did I do” “What didn’t I do” “What can I do” before getting it together a year later! None of that matters. You have the most amazing person in your life and YOU know him best!

    As for resources, wanted to throw a couple things out there for you. Where we are in FL you can receive your speech therapy through the school board. If you receive that assistance, you can actually get scholarships/grants to attend any school. If your income is limited we have low-income scholarships in our area that allow for the same provision. Also, each school usually has their own private scholarship programs. Know that nothing is out of reach. Talk to everyone! You never know what is out there until you ask! We tried to go public school, it was agonizing to say the least. She was practically in tears every day, and I personally knew the teachers and walked her in every day. Just didn’t work for us (obviously). So I applied for a scholarship, and I pay a reduced amount to send three of my kids to a private Montessori school. This environment may be a WONDERFUL option for you to explore for schooling! Tour schools, interview them, ask about your options.

    Talk to a resource officer at your local Department of Children and Families. No, you may not need their services per se, but they know everyone in the area that offers services that may benefit you and your DS.

    I hope that this little bit helps somehow. I just felt compelled to tell you it’s ok. After 9 years, our beautiful girls is blossoming socially in a way I never thought possible. Yes, she’s awkward, but one-on-one? She’s amazing! Even with her friends. You will be wonderful, I can tell by your love and concern.

    Sending you my best….

  3. Carolyn Sep 28 at 2:32 am Reply Reply

    I just wanted to offer some ideas from a totally different perspective – I was an ABA therapist for 5 years, and I would suggest asking your therapist all of those same questions :) Since they know (or at least are GETTING to know) your child and your family, they can mostly likely recommend some books or websites that would be helpful, and they can certainly offer guidance when it comes to the schools in your area and what options are available to you. Parent training should be an integral part of any therapy program, as well, so I’m sure they’d be THRILLED to give you tips on how to handle certain issues at home, or other things you can work on with him outside of therapy sessions. As a therapist, the BEST parents to work with were the ones who really wanted to be involved and learn everything possible, so even if you FEEL ignorant, know that you already have people on your team who are there to support you and guide you (you just might have to tell them that you’re ready for their help!) Good luck! :)

  4. Alissa Sep 28 at 11:49 am Reply Reply

    Carolyn offers great advice – talk to your current therapists and see what they suggest for other options, more you can do, etc.  And see if you can get those 2 therapists you already use talking to each other so they can be on the same page, maybe working toward the same goals.

    The very best thing we have found is Early Intervention (which in PA then turns to the Intermediate Unit, at age 3).  But call your Early Intervention office and they can point you the right way.  For us, having an evaluation and an IEP is the best way to get everyone on the same page.  Here’s our IEP goals.  What are you gonna do to help us meet them?

    My son (ASD, would probably be Aspie if they still did that diagnosis) has thrived in our local Special Ed classroom.  He receives OT and Speech Therapy there, with his friends (he needs the socialization) and the goddamn BUS comes to pick him up so I don’t even have to leave the house.  It’s amazing.  Also, FREE.

    We also do individual therapy (not really ABA) once a week at home, and his therapist visits school, play group, wherever we think would be helpful for her to observe and help out.  Our at home therapy is covered 100% by my state’s Medical Assistance program, which he qualified for with his ASD diagnosis.  Definitely check in to state medical assistance (your local Early Intervention unit should be able to give you more info).

    In the beginning, when you’re trying to get everything all sorted out and make sense of everything and just fill out ALL.  The damn.  PAPERWORK.  It’s overwhelming.  But just remember.  This is still your kid.  Still your awesome, fantastic, amazing kid.  Remember to love him and play with him and try not to let all the other “stuff” get in the way.  And you’ll be amazed with how far he can come.

    Best of luck to you!

  5. Heather Sep 30 at 9:21 am Reply Reply

    Dear ASD mom,

    I’m the voice from the future.  I’m happily married to a man on the spectrum.  Our marriage doesn’t look like a TV show, but it works and we both get what we need.

    Good luck.

  6. Emily Sep 30 at 8:17 pm Reply Reply

    Another former ABA therapist chiming in.  Autism Speaks first 100 days is a great resources for parents new to the diagnosis. 
    http://www.autismspeaks.org/family-services/tool-kits/100-day-kit

  7. ASD Mom Oct 01 at 1:48 pm Reply Reply

    Thanks so much Amy and to every single person who commented. I am going to check out all of the options you have mentioned. We’ve started with Birth to three and they are going to hand-off to the school system on his 3rd birthday so with your inputs I believe I am starting off from a good place. I appreciate all of your kind words.

  8. C Oct 10 at 7:28 pm Reply Reply

    I’m a little late to this discussion, but this may or may not be a relevant article.

    http://www.salon.com/2013/09/21/thats_not_autism_its_simply_a_brainy_introverted_boy/singleton/

  9. rebecca Dec 31 at 3:39 am Reply Reply

    Hi there, don’t worry if he doesn’t interact with other kids … that’s only a concern if he’s not happy. If HE’S content, then just go with it!

    In social situations, such as a playground, it’s OK to hover a little, so you can explain what other kids might be expecting him to do, and to let him know not to try and dictate how they should be playing.

    AS kids can be very thin skinned, (even whilst being unaware that their own bluntness or habit of correcting others can hurt feelings) so it helps to explain that some of the things other kids say and do are not meant to insult anyone.

    Also, make friends with his teacher and the school principal. Talk to his teacher every day. You need to know about his moods, not just his academic achievements. Some teachers have great tips to help you at home, and you’ll have tips that make their day easier.

    Give him squishy toys to palpate whilst having to sit through assemblies.

Follow us on Pinterest

Close