(Part 2) Best products from r/autism

Hi!

>A bit disjointed, no direction, I just have to let some out.

This has happened to all of us. It will change.

> Our first indication of something needing addressed was the fact that he wasn't talking. When I express this to people close to us, they seemed to think oh he must be using baby talk or can say momma and dadda. Nope. None of that. Not even assigning nonsense words that we could decipher. I personally did not think this was a big deal, I didn't start talking until 3. However, tons of people around me told me to talk to our PCP and get him speech therapy. Ok, what could it hurt?

> Our PCP informed us that she was going to set up an evaluation. I assumed a basic inventory of his health and hearing, blood tests, etc. What I did not expect was a full battery of experts. The day lasted nearly 6 hours. 5 different experts, MDs and PhDs, and many other initialed experts among them. I was pretty impressed with their demeanor, much of the time was spent "playing" and observing. Questions and directions. I did not realize from what looked to be pretty simple process how much info was gained and being interpreted.

> The indicators. At first, it seemed ridiculous. I'm certain based on my son's demeanor they had arrived at their conclusion before much evidence was present. Examples, when playing with cars, the minute he rolled a wheel, they asked us if he does this often or with other objects. Nope. Just loves rolling cars about-like a normal kid! They informed me that he did not like stacking blocks-he preferred lining them up. Ok.... He stacks them all the time at home. Last doc we visited with seemed especially keen on his habits, noting he only chose the cars, ignoring everything else. Asked us if he flaps, nope. Upon wrapping up, he gathered the cars (very gently, not in a mean way) and of course our son gets mad. "That's flapping!" An immediate reaction, I was surprised this wasn't "normal" for a two-year-old? Doc said it with such authority I didn't question it.

Your evaluation was performed in the best possible way. Our twins were evaluated along that procedure (ADOS-2 probably). Since your kid doesn't talk yet probably you will need a second evaluation in the future. Our ST made us wait before evaluating our kids (like or pediatrician, he also suspected at least one of them had ASD). His approach was to produce a communication channel before the evaluation to have a better assessment. After the long evaluation, kids were diagnosed with 18 and 22 on the ADOS scale. This put them above the Asperger range, but at a mostly functional range. Our neurologist (the head of the evaluation team) told us that this evaluation was their last. No further evaluation was needed.

> On the drive home, my emotions ranged. First, these guys don't know my boy. It seemed like they made a big deal about everything. How could they have gathered enough info to make such a huge diagnosis???

Because they are trained, they know where to look. The other positive point is your boy is very young so all the symptoms are there to catch and no bias because of age is present. So it is easier to pinpoint the level, and produce a set of 'countermeasures' through early intervention to make him feel better about the world and himself.

> Eventually, I realized, I do know my boy. I know him deeply. He reminds me of myself. Him playing with little pieces of carpet in a room full of toys, me sitting down in the outfield playing with grass instead of playing T-ball. Intent on his particular toys, as I was with my Legos. In his own world. Throwing the blankets off at night, perhaps this is a skin sensitivity? Banging random objects, is that stimming? This and more, many more little signs...they add up.

You know a part of him, but being autistic there is another part that is hidden behind a veil and you can't access to it and he cannot explain to you that yet. One book (recommended here) that I found quite enlighten is The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism. You can read it in an hour.

Also, I also told the psychologist interviewing my wife and I that my kids remind me of myself as I shared some traits with them. She told me, they were the ones being evaluated and whatever similarity was not relevant to them. Thus, don't overcomplicate yourself, try to build from your shared traits upwards to guide him into a fulfilling life.

> And I well up. I love my boy. He isn't a set of signs or indicators. How do they have the temerity to think they can assign labels or know what he is? I know WHO he is. And I worry. About programs that aim to "normalize" him. About teachers who may not give him the benefit of the doubt or the opportunity to excel. I worry that a diagnosis may hold him back and instead of building him up they'll remove his essence. Family who sees him differently.

Acceptance will come, but this doesn't mean you won't demand them to excel. Yet, you need to know his boundaries and be very aware of his strength. I wrote a lot about my kids here. Every kid is different, so you have to look for yourself.

Our twins are 4 y/o now. They started ST at 2.5, then moved to an inclusive school (50%ASD-50%NT) with ST, OT and PECS oriented classroom. This environment has helped a lot to develop their spoken language, feel more comfortable around people, and communicate their needs. You NEED every therapy available NOW.

Our neurologist told us the following: "if you do nothing now, they can go to a regular school without problems. They will adapt, but you won't have the best version of themselves. If you support them in every possible way, go to [this type of school] then you will drive your kids to become the best they want to be.

But for you, doing this will be the hardest five years of your life. So, you need psychological support and live a healthier life. You need to be there, every hour for your kid now."

So we took the second option.

Our kids, can speak now (not with the fluidity of a 4 y/o) and communicate most of their needs. Their tantrums and quirks are mostly contained (they appear when they are really tired or anxious). They are very clever kids, that love numbers, words, and music.

They excel at numbers: count from 1 to 30 (understand the symbols and their relation to quantities) in Spanish (mother language) and English. They can do basic sums (without finger counting) and now they are learning subtraction. They also have a strong interest in words: know the full ABC (some letters from the English pronunciation), read some words, understand words in English (colors and shapes; also many animals), and now they are learning to construct words from syllable.

We are using iPads to strengthen these areas. I bought them Tiggly when they were very young (two years ago) and this fourth birthday (yesterday) they received Osmo's Genius Kit. They loved the Tangram because puzzle-solving is one thing they love to do a lot (and this is in another level).

> I don't know the future. I only know that we will exercise agency in every decision along the way. We will advocate for rights and opportunity. We will be better than our parents. He will not be called "doofus" or "f-ggot." I'll hug the sht out of him but never hit him. He's our boy dammit, I love him, and that's all that matters.

Nobody knows​ the future, even us 'normal' people.

What you feel about parenthood is what I felt, even before knowing they had ASD. The thing you mention may even happen to a regular kid with special interest, whether has ASD or not. In our special case, we need to learn about ASD to approach to learning in the best possible way for the mind of our sons.

Be patient, It will be better.

EDIT: grammar.

I'm glad you're wanting to help, but I'd really encourage you not to do anything with the puzzle piece. It's used as a symbol to mean that autism is a puzzle that needs to be solved, which is really hurtful. Here's a good blog post about it. If you do a bit of googling, you'll find many more.

Some good books are Since We're Friends and The Autism Acceptance Book if it isn't over their heads.

What's more important than awareness is acceptance. If kids learn that autism is a series of "can'ts" (can't speak, can't make friends easily, can't understand sarcasm or jokes, etc), they'll come away with the impression that it's bad. The message that needs to be taught is that autistics are "different not less." I've read about a lesson being done with slightly older children where they name things that are different about themselves or that they struggle with ("I'm the only one here with red hair," "most of my letters come out backwards," "I moved here from Canada," etc) - then the conversation shifts to a discussion of how just because everyone is different and has different issues doesn't mean they can't still be friends or that some people are better than others. Autism isn't something to be feared. Make sure the other kids know that.

A lot of people will suggest The Curious Incident of the Dog in the Night-time, which is a fine book, but the author didn't do enough research and was just writing a novel.

I'd recommend John Elder Robison's books. He has wrote multiple memoirs and lives a very vivid life; he, his son, and possibly (don't remember if she was diagnosed) his son's mother are all autistic. I loved the books, and I've never seen myself or connected with a book like I did with his. His books aren't hard to read and I believe there are four in total.

The Curious Incident of the Dog in the Night-Time:
https://www.amazon.com/Curious-Incident-Dog-Night-Time/dp/1400032717

Look Me in the Eye:
https://www.amazon.com/Look-Me-Eye-Life-Aspergers/dp/0307396185

Autistic adult here. I would recommend reading the writing of Autistic adults. Blogs are good place to start - you can digest information fast without committing to reading a whole biography in book form. Some Autistic adults have even written about their experiences with ABA when they were children. Some have written about what it was like before they could communicate, how frustrating it was, and the behaviors they had. I'm sorry I don't have a list full of links for you, but just google around. Here is one link entitled Everything I Need to Know About Life I Learned from my Behavioral Therapist :http://www.autistics.org/library/behavioral.html Think of it as "what not to do".

The very best books on autism I have read are by Olga Bogdashina. The most useful ones for you will likely be the ones on Sensory issues:
http://www.amazon.com/Sensory-Perceptual-Issues-Asperger-Syndrome/dp/1843101661/ref=sr_1_1?ie=UTF8&s=books&qid=1302381357&sr=8-1

and Communication: http://www.amazon.com/Communication-Issues-Autism-Asperger-Syndrome/dp/1843102676/ref=sr_1_2?ie=UTF8&s=books&qid=1302381357&sr=8-2

I cannot recommend these highly enough!

What makes these books so good is that the author combines current scientific research, explained clearly, with many first-hand accounts of Autistic people about their experiences. If you're going to work with Autistic kids, you have got to understand that their sensory perception, thinking, and ideas about communication are totally different from your own. Not better or worse, but different. A noise that to you is imperceptible or neutral might be painful to the child. Eye contact may be painful. You have to figure out what the child's sensory triggers are, and avoid them, because no one learns very well when they're in pain or distracted by overwhelming stimuli. Also, respect the child's harmless stims. These are a coping mechanism for dealing with a crazy world. Hand flapping, rocking, etc doesn't hurt anyone - it is a way for the child to calm themselves and deal with things. It is often said that the goal of some ABA therapy is "to make the child indistinguishable from his peers". Please don't let that be the goal. The goal of anything should be to improve the child's quality of life, not to make him look like all the other kids. The Autistic child will grow into the Autistic adult, and he needs to learn how to function in the world as an Autistic adult, not as a person pretending to be neurotypical and failing.

It sounds like your main problem with speaking is anxiety, as well as anger and frustration when you can't get your words out. If you talk to yourself in private, are you able to do so without problem? That's a strong sign that what you're experiencing is more anxiety-related than an actual deficit in your language skills. (For what it's worth, your post was clear and well-written.)

Social anxiety or anxiety around speaking is very treatable. Certain medications (mostly SSRI antidepressants) are helpful. There is also a psychotherapy technique called cognitive behavior therapy which is very effective. The cognitive part is when the therapist tries to help you change your thoughts from unhelpful ones ("They think I'm stupid.") to more helpful ones ("I'm just ordering a pizza. Who cares what they think?"). The behavior part is where you practice speaking to people even though it makes you anxious. This helps you get over your anxiety.

If you want to try CBT, you'd usually find a talk therapist, like a psychologist to walk you through it. However, you can learn and try many of the techniques on your own. Here's a webpage that gives a good overview. Here's a book which covers teaches you to apply CBT to yourself.

It's the same principal as any weighted pad/blanket. Pressure all around and down, like being held in a hug kinda.


My daughter loves a weighted blanket to sleep, and when she's in a meltdown, but didn't like a weighted vest. They're expensive, so if you have the option of trying one out (we borrowed one from the school for a weekend) before investing, do so.


My kiddo has headphones in every color as well as some we've personalized with jewels/fake fur. She sees them as an accessory like any other she'd wear (she's 12).

She also has lots of bite necklaces in fun shapes/colors.

Hanen has a fantastic book for parents that is easy to read and implement, More Than Words

It goes over the stages of communication and social interaction and teaches parents how to naturally create opportunities for social connection and communication.

The Reason I Jump is a pretty good light-reading primer on the how's and why's of a boy with autism. Plenty of eye-opening information, particularly about how he describes his behaviors and his cognitive process.

Ido in Autismland is another favorite of mine. More in-depth and slightly longer winded, it's a book rich in information, but definitely the one I'd read second.

The market is saturated with plenty of books on autism written by psycological or disabilities professionals, but if you really want to understand, I find there's no substitute for a book written by an autistic author.

This is a great book... really good summary and is a must read for everyone that has an autistic child in their lives
http://www.amazon.com/Things-Every-Child-Autism-Wishes/dp/1935274651

I just finished Why I jump. The author is a non-verbal autistic boy and he does a good job explaining some of the behaviors associated with autism and what his inner state is like. It's also really short, only took me around two hours, and written in a very clear Q&A format.

Piggy backing on this because we have tried several necklaces and my daughter has found one she loves but now I can't figure out what strength it is. It is the orange twisty one. https://www.amazon.com/gp/product/B07CMTLTRB/ref=ppx_yo_dt_b_asin_title_o03_s00?ie=UTF8&th=1

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Anyone know how to get more of just this one or to find others with similar strength/texture?

You have different ones. The one with the smaller balls in them are a bit stiffer.
I found this:

https://www.amazon.com/Orb-Odditeez-Halfzeez-Squishy-Turquoise-Pink/dp/B07N6HCQVC

(Holefully I can link, if it gets deleted PM me for a link)

They are called Orb Odditeez. The one I have is a slimeball, but they have different ones and different sizes. I'm not too good with searching products on amazon. I usually use dutch webshops, but at least I found the name. Hopefully they have some you like.

I was diagnosed with ASD on June 29th of this year. I felt exactly the same way. Was trying to figure out what next, and how I should feel about it. I think as of right now, I just accept it, it's how I have always been, and to me it feels "normal".

I did read an interesting book though, to help me understand the diagnoses:

The Complete Guide to Asperger's Syndrome
https://www.amazon.com/Complete-Guide-Aspergers-Syndrome-ebook/dp/B0050IY61G

Are you able to buy any online (or if you're a kid, get a parent to buy them for you)? A ton of autistic people I know, from my preschooler to some teens and adults in our community, all love these as an option for just literally canceling noise...they're not for listening to music, just blocking out noises. People who are "sensory avoiders" don't seem to have a problem with the feel of them, and they are apparently comfortable for lengthy use. Very reasonably priced, and as a bonus they come in a wide range of cool colors/patterns!

I got this to carry and organize my things and it's perfect: https://www.amazon.com/gp/product/B01LAXDKXE/

There's also an amazing line of bags with lots of pockets from Think Geek. A lot of people love the Bag of Holding: https://www.amazon.com/ThinkGeek-Bag-Holding-Survival-Crossbody/dp/B01ACFHYN8

When I need more than the usual stim stuff along (like carrying ear protection or bulkier things) I use this backpack, which is on the bigger side, but has lots of pockets and is really comfy even under a heavier load: https://www.gamestop.com/collectibles/bags/backpack-of-holding-by-thinkgeek/124520

I just finished reading "Ido in Autismland," a book written by a non-verbal autistic teenager.

His insights into what it is like to be autistic and the way well meaning people treat autistic kids are invaluable and should be required reading for anyone working with autistic kids.

Jed Baker's social skills picture book is pretty nice for children with autism if you're looking for more of a "teaching" book

http://www.amazon.com/Picture-Teaching-emotion-communication-children/dp/1885477910/ref=la_B001JP01XG_1_1?s=books&ie=UTF8&qid=1380783367&sr=1-1

The best 'primer' on autism that I have come across is 'Autism & Asperger Syndrome in Adults' by Luke Beardon:

https://www.amazon.co.uk/Autism-Asperger-Syndrome-Adults-Beardon/dp/1847094457/ref=sr_1_1?ie=UTF8&qid=1549280280&sr=8-1&keywords=luke+beardon+autism

I just read this book and it conveys the basic concepts in a beautiful, simple way.

Ten Things Every Child with Autism Wishes You Knew

http://www.amazon.com/Things-Every-Child-Autism-Wishes/dp/1935274651/ref=pd_sim_14_4?ie=UTF8&dpID=51nHl1KOasL&dpSrc=sims&preST=_AC_UL160_SR107%2C160_&refRID=1RK2JE56ATQX4EY87Y80

My son really likes these chewy tubes: https://www.amazon.com/Knobby-Texture-Chewy-Tube-Green/dp/B00175ROGU People usually can't even tell what it is! He really doesn't use it at school, but on an extra stimmy day, I make sure he has access to it.

I ran a quick google search and found a thread of people searching for the same thing. It looks like the gum base ( https://www.gleegum.com/product/refill-kit-to-make-gum/ this was linked) functions as well as chewing gum and should be easily sweetened with sugar. Another thread mentions this gum ( https://www.amazon.com/Falim-Sugarless-Plain-Pack-Pieces/dp/B000RKU2QU/ref=cm_cr_arp_d_product_top?ie=UTF8 ) which appears to be just straight up gum.

ALTERNATIVELY, you might invest in a clear retainer like a night guard sort of thing. I have one to sleep in because of jaw pain. When I first got it, it was clear as glass. 8 years later it's yellowed. But any dentist will warn you that excessive gum chewing will cause serious jaw pain. The pros of a retainer is that it's a neutral flavor, no one will harass you for having a dental device unless they're in middle school (and even then), and you clean them with a tooth brush and tooth paste.

This is my son's favorite Dino book if you are looking for a really solid add to the Dino book library

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https://www.amazon.com/Dinosaurium-Welcome-Museum-Lily-Murray/dp/0763699004

If you're looking for non-clinical, there's a fictional book called the the Curious Incident of the Dog in the Night-Time (http://www.amazon.com/dp/1400032717).

I would also recommend checking out some of the many wonderful blogs, by parents of autistic children but especially autistic adults themselves.

The Social Skills Picture Book is a really good photographic guide to managing every day social situations too.

Read the book " The reason I Jump" and maybe look around at http://flappinessis.com/

Your husband needs to think differently. I say this with kindness.
Your child does this because he needs to, and because it makes him feel better. He needs it.

Noise cancelling headphones. I nanny for a family with a 5 year old who has autism. They couldn’t take her to the amusement park because of the noise. They found some on amazon and they’ve been a game changer! She no longer has to miss out on loud activities!

here’s the ones she has