Thursday, March 07, 2013


Young friends have just been given a solid diagnosis for what they suspected: their young son - I think Max is around two - has autism. There are folks here who can advise me what is best to say and do at this point.


Earl Wajenberg said...

Make sure it is autism. Our daughter was diagnosed with ADHD when it was a fashionable diagnosis, and the standard treatment for that was almost comically wrong. (Almost.) Turned out she was autistic (Asperger's, which is something like autistic; they just changed all the labels around).

Now, a few years later, autism is a fashionable diagnosis, and after going through at least three with my daughter, I don't trust the profession's diagnostic ability.

They are lucky (relatively) to have caught it early -- almost no matter what "it" turns out to be. The sooner and longer you can help, the better.

If it is autism, there is new research indicating that one can, to a degree, grow out of it.

Grandma Bee said...

There are whole new generations of therapies out there since our kids needed them, so maybe the treatments I talk about below have a different name or form now. Your friends' first line of defense is the local Autism Society of America chapter. They will help your friends navigate the systems.

Every state has one Medicaid program for children with developmental disabilities, that is not means tested (so the family doesn't have to give up the roof over their heads in order to qualify for help). Here in Wisconsin, it was called Katie Beckett. I don't know what they call it in your state. Rules vary from state to state, but medicaid rules say the states are required to provide funds. These funds can be used to pay for intensive in-home therapy and other treatments that aren't covered by insurance.

Autistic people lack the logical connections necessary to transfer a learned skill from one situation to another. They also lack the intuitive connections that more typical people can make when learning a task. The intensive in-home therapy provides repeated opportunities to practice new skills.

Another treatment to investigate is Auditory training. This can be done with help from an early childhood specialist in the school system if they have the background to do it; if not, ask the local Autism Society chapter who does this and how to get it covered. Auditory training uses specially produced music that has beeps and boops and other extraneous noises worked in. The kids learn to screen out the noise and focus on the music. Cuts down on auditory overload.

Our Asperger kids are adults now. Tell your friend that our daughter who couldn't have a conversation at age 9 is now 21 and in culinary school. Our eldest, who moves like he isn't put together right, is working 30 hours a week and also has the possibility of doing some freelance transcribing. Our youngest, who spent most of 6th grade in the principal's office, has learned how to manage himself and is at the community college. There's hope!

Larry Sheldon said...

Beyond being a parent (and believing that if I had been born 20 years ago instead of 74, I would have been branded with all of the A's, drugged up and suick in a corner where I wouldn't bother anybody), I have no credentials.

But you said "There are folks here who can advise me what is best to say and do at this point.".

Since it is no your child you have no business "making sure", no business being concerned about therapies UNLESS the parents explicitly ask for your opinion.

What to do and say? Say and do what ever you might do, greet them, befriend them, offer assistance and ask for it as the situations dictate.

Be a friend, do what friends do, say what friends say.

Anonymous said...

Be vary of psychiatrists. I have a relative who got that diagnose wihtout even being close to meeting the criteria. Those guys used to blame the parents until the 1980s when they were disproved by behavioral genetics research.

bs king said...

Say you'll babysit, if you're close enough to them.

If not, anything that consistently lightens the load is helpful. It can be an exhausting condition for the parents, and helping them keep their own sanity can be quite useful.

My husband's cousin does this regularly for his sister in law. They take the autistic son to movies or sporting events (which he loves, some autistic kids couldn't handle it) and let the parents have an afternoon to themselves or time to focus on their non-autistic child (who can feel neglected).

james said...

One of the hard things (important for keeping your temper) is to give up expectations. Everybody else seems to have (superficially) no problems--their kids follow the normal patterns and are off on their own, and yours aren't. And some autistic kids seem to have amazing breakthroughs with this therapy or that diet. But not yours.

A little helps here, a little helps there; and you see changes and start to "what if". But then once again they miss the bright blinking billboard that everybody else saw.

And as bs king says, you have to make sure you give plenty of time to the non-autistic kids, but you won't have as much as most parents.

Assistant Village Idiot said...

Retriever sends this: No kid is hurt by the behavioral interventions for autism, so don't worry about diagnostic accuracy . DO encourage them to hold off on drugs, at least til age of 6 or 7 (if then). The meds have appalling side effects, tho they are sometimes necessary if a kid's sensory issues make them lash out physically when overstimulated or frustrated.

Encourage parents to go to a local course on managing the disability and educational process. Almost all states have at least one agency that offers a 12 week course called Parent to Parent or some such that goes over ADA. IDEA, school mandates, access to local services, advice on clinicians, plus helpful tips from parents already in system . Sibling workshops for less affected sibs are helpful ( it generally becomes apparent that most of the kids and at least one of the parents have at least a tinge of it even if one parent is typical). Keeping the rest of the family sane and happy will be very difficult,

The mother will be at risk for severe depression and possible etoh abuse because of extreme stress and social isolation (the latter worsens as the kid gets bigger and odd behavior becomes less tolerable). Give her encouragement and respite. Most fathers either leave or throw themselves into work or research about autism (intellectualization) to cope. The mom does the hands on care day in, day out, gets hit and scratched and bit and feels increasingly abandoned by a spouse in whom she recognizes more signs of autism daily. It can happen. It did in my family. Family therapy is pretty useless as people wonder why the mom is so angry. She doesn't dare tell the truth about the violence, for fear of stigmatizing the Kid, or having the normal kids removed from the home, so gets labelled a crazy bitch.

Reach out to the siblings so they so t get ignored in all the sturm UBS drang.

Pray unceasingly.

Love the kid and treat them normally. Teach kid about God and make them help out and think of others. An autistic kid who helps at coffe hour and on the soup kit hen grows up altruistic. Make sure the kid has a golden retriever. Best therapy possible: unconditional love.