Autism-can you tell me about it?

[Deleted]

My nephew who is 3 was diagnosed with high functioning autism today. We had suspected he was autistic due to his behaviour and just certain things he was particular about. My brother and SIL will be getting OT and speech therapy for him. Can you tell me your experiences dealing with kids with autism, I am not familiar with the course of treatment at all.

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[pixelpassion]

There isn't a typical treatment for kids with autism, since every kid with autism is different. But common things are OT, PT, speech therapy, behavior modification, applied behavioral analysis, etc.

The most common challenges that kids with autism face are the difficulty picking up on social cues and general difficulty communicating and being attuned with others. Also, children with autism have a really hard time with change. Like a change in environment, a substitute teacher, etc.

The earlier a child is diagnosed and placed in treatment, the better. Having a bunch of different therapies that are persistent will definitely have an affect though. It may take a while and may initially seem like nothing is working, but after about a year of persistent treatment, their progress will likely skyrocket.

Hope this helps!

[UMaineTeach]

The biggest thing is 1 time can constitute a pattern. Let's say you want the child to walk down the hall. One day you're tired and don't call him out for skipping. The next day he thinks skipping is the way you move down a hall and then you have to break the habit and that often involves some kind of tantrum, but the longer you let the behavior go the harder it is to break. But you can leverage that to build positive patterns quickly.

I have worked with 3 children with autism and they are all different.
In general,
- they all like to be able to predict how things will go, when they will end, and what comes next, but the level of support they need to do so varies.
- they all have preferred activities
- they have all had some preferred activities turn into an obsession
- if they tantrum, yell, hit, kick... it's likely something you did. maybe you meant to do it; maybe you didn't. If it's not something you did, it's something someone else did. I had a kid who went he got hurt in anyway would immediately attack the closest person.

Really, with autism: You live, you learn - you get into a rhythm with the child and figure them out like a puzzle.

[litebright]

My DD1 has autism; she was dx'd at age 3.

"High-functioning" isn't an actual diagnosis, it's kind of a descriptor. Usually means that they have IQ at least in the range of normal (no significant cognitive disability); sometimes, colloquially, it also means that they have self-care skills (dressing, potty-training, eating, etc.) that are age-appropriate.

There are a wide range of courses of treatment, and absolutely nothing that guarantees any particular outcome. OT for gross or fine motor delays, low muscle tone, and/or sensory issues; speech for communication skills; social skills work for learning the things that most kids learn naturally like how to read expressions, tell when someone else is uncomfortable, etc. ABA is the "gold standard" -- applied behavioral therapy -- but there are other avenues that they could take (RDI, relationship development intervention; Floortime, which works on play and interaction; are some of the most reputable). He will likely receive services through the local school district. My DD1 started four days a week of preschool at three in order to get all of her therapy time in, which wasn't what I pictured us going at age three, but was what she needed. Kids on the spectrum are a wide range -- the saying goes, if you've met one kid with autism, you've met one kid with autism. Some end up in inclusive, SN-only classrooms because of severe behavioral issues with or without high IQ; some are non-verbal; others are the more stereotypical absentminded professor/awkward genius/Sheldon from the Big Bang types. Girls tend to present differently than boys with fewer behavioral issues.

My DD1's biggest challenges are social & communication skills. It's hard watching your child not have any real friends other than her sister, even though she does well in a classroom and is on-track or advanced academically. She tries, but other kids are pretty much mystified by her quirks. It can be a lot of work to interact with her, and most kids aren't that patient. Adults think she's adorable and older kids accommodate her well, but she just doesn't get the back-and-forth of other girls her age. I hope that will improve over time.

It's not something that just goes away, although most symptoms improve over time. It's a developmental delay that, depending on the kid, can be sort of equivalent to 1/3 to 1/2 of their chronological age -- so a three year old might act more like a two, or even an 18-month-old in some respects. The differences are likely to become more pronounced as he gets older. It's a lifelong situation, and post-dx is a hard time of adjustment, emotionally. They have no idea what his future will be -- whether he'll be able to maintain relationships/cooperate and communicate well enough to get a job, get married, go to college, live independently, etc. It's very scary. Let them speak about it as much or as little as they want to, and mostly just love him and treat him as a regular kid, with reasonable accommodation of his differences.

It doesn't change who he is, it changes what they know about his needs and how to best help him thrive and develop.

[auntie]

You got some great information, not much left for me to add.

I am the forums moderator of an international information and advocacy group for the syndrome formerly known as Aspergers, HFA and PDD-nos without intellectual impairment. I also have a 19 year old son with Aspergers.

Was he identified through the school district? Or was this a private evaluation? If he hasn't been seen by the school district, your brother will want to contact their district for an eval and possible services which could include a special preschool with interventions.

I'm going to pile on what the others say about the old chestnut "if you've seen one person with ASD, you've seen one person with ASD". The other piece to this is that your nephew's presentation will change over time with interventions and maturity. He could present with other comorbid issues that change how his autism impacts him.

I do disagree with 2 points made, while ABA is the gold standard therapy once ~20-40 hours/week is reached, it is not the "most common" approach used. ABA is prohibitively expensive for most families in addition to being time consuming. It is even less often used for children who are deemed "high functioning" and who would generally be served in a mainstream setting for school. In my school district, only the more impaired students would be in ABA classrooms.

The other point is around diet. There are some people who take a dietary approach to autism. A strict 100% gluten and casein free diet is most commonly suggested of the dietary approaches. Among the hundreds of people I know who have "done diet" only about 15% report an improve. Typically the kids who seem to do better are also a subset of kids on spectrum who have gut issues, bad allergies, eczema, very limited "white" diets and aggressive tantrums. I don't know a single mainstream specialist who would prescribe this diet. There's a DAN! protocol which includes diets and supplements, but not all DAN! "doctors" are medical doctors. A surprising number are chiropractors. Many of the DAN! followers and GFCF enthusiasts are also anti-vax as well.

As LB pointed out "high functioning" is used to describe a person who has autism with and IQ over 70. Historically, it was believed that the majority (75%) of those with autism also had significant intellectual impairment. Since the number of dx's has exploded since the mid-1990's this seems no longer to be the case. Some physicians will also use the term "mild" which is a pet peeve of mine. Mild is a relative term. The problem with "high functioning" is that IQ is only one factor that contributes to the outcome of a person on spectrum.

While there's a sense of urgency around getting a dx early and getting services in place, I'm not entirely certain that leads to the best outcomes. The most effective therapies DS did were cognitive social integration therapy and CBT which aren't appropriate for toddlers. I know people who were dx'd as adults who were successful in improving their social behavior using CSIT and RDI.

It might be useful to read a book or two about ASDs. I like Coplan's "Making Sense of Autism Spectrum Disorders" a lot.

www.amazon.com/exec/obidos/ASIN/0553806815/ref=noism/oasisonlineasp07

(fwiw, "Teddy" in the book is about 85% based on DS; I had to sign a waiver to include him)

"The OASIS Guide to Aspergers Syndrome" is a fabulous book for navigating the unique issues of a bright kid who sound academically but who is struggly socially and behaviorally.

www.amazon.com/exec/obidos/ASIN/1400081521/ref=nosim/oasisonlineasp07

I would encourage you to re-read Litebright's second to last paragraph. That's pretty much what parents want from their friends and families for their child on spectrum. If he gets stuck on a special interest or stims on a particular kind of toy, his parents may want to limit access to such things so it would be prudent to run any gift ideas past them before shopping. DS loves trains, but for a time he was escaping into his head around trains, so we had to take them away for a time.

[spedrunner]

auntie and light bright covered it all. I had a brother that was "severely" autistic and work with students all over teh spectrum. If you have any specific questions, or need any ideas, please pm me!

Its very nice of you to want to inform yourself. xoxo