Hacker News Reader

Comment by isolli | Hacker News Reader

My wife and I believe our daughter has a (thankfully) mild form of autism. It took us a while, but when the realization came, it was a relief, as we stopped being angry at her and at ourselves: 1) hopefully we did not do anything wrong to cause this, and 2) it is not our daughter's fault that she behaves this way.

We did not get a specific diagnostic, and I'm not sure it's worth seeking one. As far as I know, the diagnostic is not scientific, so I wouldn't consider it a strong validation of what we're experiencing. However, a diagnostic might make it easier to explain to our family and friends what is going on, and talk about it.

Any thoughts?

View on HN

I am the stepfather of a 14YO girl with rather severe autism (non-verbal, significant self-stimulation or "stimming/stims", multiple comorbidities like OCD behaviors), and about a month ago our adopted 3YO daughter was also diagnosed based on interviews with us and a couple/few hours with a doctor.

The diagnosis of the 3YO will provide access to several services where I live (NY state), and she's already been enrolled in an early education class with others on the spectrum. Before turning 3 she was receiving about 2 hours of in-home speech and therapy per week.

Get her to a doctor for diagnosis, as early services can be very helpful in long-term outcomes. We also had early services for the 14YO that unfortunately were not entirely effective due to the seriousness of her condition, but we're optimistic that the 3YO could be in general education classes by elementary school.

My 8 year old daughter is on the spectrum (diagnosed level 1; normal IQ in the 110ish range), and the diagnosis has helped us get intensive in-school support. She's doing well academically, but needs support in writing and social skills. Her diagnosis was essential to getting her the help she needs.

I also highly recommend living in a place with a decent school system and a well staffed special education department. Without that, my daughter would be floundering academically and socially isolated.

I mean, IANAD but I would definitely get a professional diagnosis before acting on the assumption my child has a specific medical condition...?

It sounds like the parent is talking about validation, not specific psychiatric action. I think it should be OK as long as they don't present their child as professionally diagnosed as such.

Thanks. We're only acting on it insofar as we read about it and try to find practical ways to deal with it. We're not going to medicate her! And when we discuss the topic, we always start with: "We believe that..."

It's not standard to medicate for autism, FYI. The standard recommendation is therapy (Applied Behavioral Analysis, occupational therapy, and speech therapy are most common). One benefit of a diagnosis is that often your insurance company will cover more therapy.

The right next step is to get an actual diagnosis, in my opinion. You might be off-base in your suspicions, or it may turn out that your child is more affected than you suspect.

> It's not standard to medicate for autism, FYI

Autistic people are routinely over-medicated, and that over medication one reason for the difference in life-span for autistic people.

After diagnosis? There are no drugs specifically indicated for treating ASD. You might find people on the spectrum getting prescribed ADHD meds, say, but I understand that's more of the exception nowadays.

If she has something that can be diagnosed, it can help with schooling in the U.S. (and probably elsewhere).

In the U.S. Federal law requires public schools to provide some forms of accommodations. Search for "section 504 of the Rehabilitation Act of 1973". Accommodations range from the trivial, like getting to sit up front in class or getting reminded to write down assignments, to things like getting an extra day for homework or getting access to remedial teaching or tutoring. Some of these could greatly relieve stress.

"My kid never even realizes that homework was assigned, and the teachers are not good enough about noting assignments online in a timely manner, so she's always late to turn them in or misses them completely, so she's failing her classes even though she gets A's in all the tests!" -- if you find yourself saying something like that, then you need some 504 meetings! An official diagnosis from a psychiatrist might not even be necessary, i don't know, but certainly a therapist might prove useful anyways in helping your child get more out of life.

It's not your fault that you are not autistic. Remember that.

(If that statement sounded weird, that's the point.)

For us the diagnosis is a formality and a means to another end: access to resources in our child's school, protection for him from punishing him due to behavior that is a result of his condition, and formal recognition by our insurer to ease accepting claims for his therapy.

> protection for him from punishing him due to behavior that is a result of his condition

That's an interesting and problematic aspect.

My wife is a teacher and has started to encounter that attitude more frequently. "He gets angry because he is ${diagnosis}, you can't punish him for it". But when it disrupts the class, and encourages others to behave similarly, then some response is needed to mitigate the situation. There is a responsibility to the class as well as the individual.

Defining that response is the problem. In one example from a local school the child was given shorter school hours as an incentive towards controlling their behaviour. Which is exactly the opposite of what 'normals' receive, detention for disruptive behaviour.

Disruptive behaviour is just the results, the cause might be exhaustion due to the classroom being to much for the nervous system. Over-sensitive hearing is one common symptom and for me it's hard to imagine how normal people manage to have a conversation in a room with more people having other conversations. Too many kids around, that's too many social interactions that are preferably avoiding. Allowing an autistic kid to stay back in the classroom and not being force to go out to play in the breaks is one solution I've read in a book. Shorter hours, less or no homework, less or no expectations in their learning progress can help.

Remember: Autists have to learn and cope with this new social situation first before they have the strength to progress intellectually. But even when the kid is normalizing, careful not to overwhelm them again, because they might use up all their energy for the school day and just break down at home.

School is a horrible place if there's the same treatment and the same expectations on every kid.

> My wife is a teacher and has started to encounter that attitude more frequently. "He gets angry because he is ${diagnosis}, you can't punish him for it". But when it disrupts the class, and encourages others to behave similarly, then some response is needed to mitigate the situation.

Who says this mitigation has to be a punishment? I am also skeptical concerning punishments for neurotypicals in similar situations.

My wife's sister is a teacher, too. I agree that defining that response is the problem. Especially for behavioral issues the balance you note is important. That's why extreme cases (e.g. non-verbal, violent meltdowns) are allowed to be segregated from general education classrooms when necessary.

We don't begrudge wheelchair bound students ramps to access rooms. We shouldn't deny children with "${diagnosis}" driven behavior alternatives to punishment when it's appropriate.

Edit: For what it's worth, I also think punishment is too often a first-resort by schools for all children. This is a complex issue driven in part by the horrific way we under-fund schools. Many of these problems would be much less significant if we funded schools well enough to provide the support they should (and are legally required to).

You have to deal with disruption. No doubt. A typical problem might be that the kid just isn't conscious of things like homework assignments: laziness, or ASD? If laziness, then discipline should help. If ASD then discipline won't help, but therapy might. Knowing really helps.

Having the right diagnosis is important. Who wants to end up taking powerful medicines for the wrong condition?? Sure, if you have no diagnosis then you won't take the wrong meds either, but that's not a reason to avoid a diagnosis.

> it is not our daughter's fault that she behaves this way

That would be true no matter what. There's no basis for the full concept of "free will". Everyone is a product of biology, culture, context, etc. etc.

The question is what capacity people have to behave in various ways given certain contexts. Most people can behave "normally" given the right context to do so. I suppose your daughter does not have that capacity (at least not to the normal level). So, having realistic expectations helps a lot.

We all get angry at times, but it barely ever helps anything, and that's true regardless of all these other questions about autism etc.

Reply on news.ycombinator.com