Searching for the best resources for information on Autism

November 21, 2017 11:10 AM

My newly 4 yr old grandson has been struggling with a variety of issues over the past couple of years. Now they're suspecting Autism might be yet another thing to add to the list.

At age 2 1/2 he had a seizure while in my care. After testing and evaluation it was determined he has Absence Seizures where he zones out for a period of time. In addition to this he has a Sensory Disorder and some learning issues. At 4 yrs old, he doesn't yet know his colors, just as an example. He has weekly appointments with a speech therapist, and is being observed regularly in his Pre-K class. Next month he'll be going to SF for a day of testing to determine if he's on the Autism spectrum.

Where can I find information on what lies ahead? I'm not looking for a "quick fix", but good, qualified information on how best to handle the struggles that lie ahead, what his future holds, etc.

A dear friend is an OT, and she's recommended that he get good OT as part of his routine. Yes?

I'm trying hard to stay positive about this, but it's just so hard....

posted by SoftSummerBreeze to Health & Fitness (13 answers total)

Hi SoftSummerBreeze. I worked with children with autism for a couple of years, and I have a clinical background with children with developmental delays. I'm sorry you're going through this. It can be frustrating and hard to stay positive.

Yes to the OT. I worked with an OT with children with autism, and she was phenomenal. You'll want someone who specializes in working with children with sensory processing disorders. The "sensory processing piece" is key. Autism inhibits their ability to regulate their internal state, which is what causes meltdowns. Many times we can't tell what is going on, but knowing the individual child is key. Different kids have different triggers for meltdowns, so it's hard to say without knowing him. A good OT will suss this out and help parents and caregivers with practical solutions you can implement at home. We used weighted blankets, gentle sensory swings,

For books, I highly recommend anything by Stanley Greenspan. His approach really focuses on the child as an individual being, meaning that (unlike methods like advanced behavioral analysis or ABA), the goal is to *regulate the child* not *get him to do X*. I love Greenspan's method (Floortime/DIR). It is not a cure, but it is a way to engage with them that improves not just their quality of life, but that of the entire family.

Go easy on yourself and take it one step at a time. It's a lot to process, and he's still so young, so it's new for everyone. It's a lifelong journey for parents and caregivers, and it's one that changes as the child matures. Part of the staying positive part, for us as educators and therapists, was seeing and celebrating the little successes and remembering that it's a marathon, not a sprint. He isn't neurotypical, so try not to focus on comparing him with other children his age (not that you are - just saying that it's easy to fall into that).

One thing that parents and caregivers often don't do is get therapy for themselves, which I'd really advocate for. Being mindfully present and teaching/caring for a child with special needs is incredibly rewarding but also very, very taxing. I once worked with a family who took time each week for a date night together, and individually went to massage/acupuncture a couple times a month. They recognized they needed to recharge, not just care for their son, and it was very beneficial to them. Support groups for caregivers of children with special needs in your area might be something you can look into.

Feel free to memail me if you like.
posted by onecircleaday at 11:44 AM on November 21, 2017 [3 favorites]

One suggestion: connect with autistic adults and prioritize what they say about their experiences and what was and wasn't helpful for them over what non-autistic professionals and providers say.

A couple of blogs I like, which might help you get oriented: Respectfully Connected. Thinking Person's Guide to Autism.
posted by Lexica at 11:46 AM on November 21, 2017 [9 favorites]

I am a professional who does these evaluations as part of my practice, and I will tell you first what I tell all of my kids and families who get the diagnosis. This is the same, wonderful child who started this evaluation process. The diagnosis, whatever it happens to be, is helping to bring into focus the pieces of who he really is so you can celebrate what makes him the person he is, and can smooth the places in the world that may present him with challenges. Ideally, this is not about changing the amazing human being he is, but about equipping him with as many tools as possible to live as rich a life as possible. And his life will be rich. He will love and be loved, he will find work or hobbies or activities that bring him joy and meaning, he will contribute something wonderful to this world. It may look different than what you had envisioned, but it will be a life with all the complexity and joy and sometimes pain that living a life brings.

As far as resources, a few come to mind. The Thinking Person's Guide to Autism, both website and book, are wonderful, rich resources for rational, neurodiverse advice and information. The landing page has a starting guide on the right hand side of the page that is really helpful to guiding first steps following a diagnosis. Wherever possible, seek out voices of people on the autism spectrum. They are the experts and their insights will help guide you in this process. Autistic Self Advocacy Network (ASAN) has some really wonderful resources written by a variety of neurodiverse authors and their families. "Uniquely Human: A Different Way of Seeing Autism by Barry M. Prizant is a really wonderful book about parenting a child on the autism spectrum. Susan Senator's books "Making Peace with Autism" and "The Autism Mom's Survival Guide (For Dads, Too!)" (though, not my favorite title), are helpful in these early days. My final, grain of salt recommendation is the Autism Speaks First 100 Days Toolkit. Autism Speaks is a problematic organization that has for years avoided including autistic individuals in its leadership and who focused their funds on finding a "cure" for autism, rather than on the very real supports that can help people with autism live more comfortable, secure and happy lives. That being said, the tool kit can be useful in prioritizing what to focus on in the early days following a diagnosis. Look through the other resources first, though, to guide your reading there.
posted by goggie at 11:48 AM on November 21, 2017 [11 favorites]

I thought the video series Ask an Autistic was really helpful when I was first learning about autism. They're short, accessible, and optimistic explainers about basic characteristics/terms, made by someone who is autistic herself. Because of that, I find they give a nice perspective from the inside (what it's like to experience these things) rather than medicalizing or pathologizing autism.

The material will definitely be relevant to autistic children, too. My link goes to a playlist which starts with the video, What are some good therapies for autistic children?
posted by fire, water, earth, air at 12:40 PM on November 21, 2017 [2 favorites]

Child therapist here -- really seconding the recommendation of checking out Greenspan's Floortime approach. It is wonderful, connecting, and respectful to the child.
posted by fairlynearlyready at 12:59 PM on November 21, 2017 [1 favorite]

(PSA: Amethyst Schaber, who makes the "Ask an Autistic" videos, uses they/them pronouns.)
posted by Lexica at 1:30 PM on November 21, 2017 [1 favorite]

With my son, it has been helpful to think of a two-pronged approach: getting school services, and getting insurance provided services. Has your grandson already been assessed by the school district? I wasn't clear from your question whether he was already receiving district services, but if not, contact the special education department of the district to request a full evaluation. I would also check with your insurance to see how to get an OT evaluation. Once/if your grandson gets a diagnosis, that will generally open doors to services as well (behavioral therapy, speech, OT, depending on the insurance and the needs).

There are local facebook groups with lots of parents/caregivers who have been through the process and/or are going through the process. Feel free to Memail me if you want to know which groups I'm in.

(I'm saying "you" call but I mean whoever his parent/guardian is)
posted by JenMarie at 1:48 PM on November 21, 2017 [1 favorite]

Thanks for pointing that out, Lexica! I hadn't realized that (or that they had a tumblr, which looks to be another good resource).

I thought of another one. Musings of an Aspie is a blog written by a woman diagnosed as an adult. But there's a lot of articulate, informative writing on there which explains the neurobiology and the experience of executive function, sensory processing and stimming. Here's a page that links to a bunch of posts, sorted by topic. Your family might find the posts under the header "Growing Up On the Spectrum" useful.
posted by fire, water, earth, air at 1:57 PM on November 21, 2017

Oh! I left my post incomplete. I meant to say that we used weighted blankets, sensory swings, art therapy, and music to help each child find their place of calm throughout the day. Again, this is where a good OT can really help. Where I worked, we did home visits and visited with families to observe and help troubleshoot challenging issues in the home - especially transitions like mealtime and bedtime.

Another key thing is communication. If the child can't communicate, they're going to have a meltdown. They need to communicate and have a way to be understood. Having a speech language pathologist who is experienced with children with autism can be really helpful. Where I worked, the children were all nonverbal so the methods may be different for your grandson.

The outcomes for this were good, and improved the better each staff member got to know each child. We used the DIR/Floortime approach, as another poster mentioned, were consistently mindful and respectful of each child. We acknowledged various challenges and aspects of their disability, but never pathologized their experience. Following the Floortime approach, we did our best to get to know each child personally and really understand what motivates, interests, and drives them to do what they do.
posted by onecircleaday at 3:57 PM on November 21, 2017

Not what you asked, but I have known several people whose children's symptoms reduced remarkably once cow's milk products were removed from their diet. A couple of weeks trial should show whether this will help.
Best wishes.
posted by Enid Lareg at 6:41 AM on November 22, 2017

Response by poster: Thank You all! So many resources to explore and great information!

A little more information about my guy.... He's very vocal and witty. He's very caring and loves his family. He mostly plays alone at school, but has made one special girl friend this year that he likes to spend time with. He's mostly a happy little guy, but of course has his moments.

Behavior wise... He often does not respond to simple requests. No recognition of having been addressed at all. And he's highly sensitive to sound. He's also not a fan of crowds.

My OT friend suggested Compression Therapy, as well as Therapeutic Listening. I'm looking in to those, and will be passing this info along to his parents.

Thanks again for all the helpful information!
posted by SoftSummerBreeze at 7:51 AM on November 22, 2017

Thinking Person's Guide to Autism listed above has lots of great information about various therapies and what has been shown to be effective. Therapeutic Listening has a not so great efficacy rate.
posted by goggie at 10:03 AM on November 22, 2017

Autism professional here. There are many good ideas and resources about. But . . . be careful about putting too much hope into sensory interventions. The science isn't good on them.*

I have 20+ years of experience with autism and school law. MeMail if you have questions and I can provide resources and tips.

You might also find some resources here: http://mtautism.opiconnect.org


* I have never been able to figure out how to hyperlink.

https://www.forbes.com/sites/emilywillingham/2017/05/27/sensory-therapies-for-autism-how-much-sense-do-they-make/#4d79cf34d79c

http://pediatrics.aappublications.org/content/pediatrics/early/2012/05/23/peds.2012-0876.full.pdf
posted by ITravelMontana at 3:34 PM on November 24, 2017 [1 favorite]