When new members ask about diagnosis

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Mod. edit: this topic was created by request from an off-topic discussion occurring on this thread:
http://www.wrongplanet.net/postt264863.html

Yes I agree with you and Mrbigmouth, kids with friends can be on the spectrum. I'm just stating the probability is more leaning toward ADHD than ASD without necessarily precluding the latter...

Yes, I understood your intent - what I meant was that your phrasing might lead someone to believe they don't need professional help, especially if they were already inclined in that direction. For instance, I seem to recall situations where we've had posts like this from someone trying to "disprove" their spouse or school or whoever. (The OP does not appear to be this type, so I'm speaking more generally.)

IMO anyone with enough concern (even if the concerns aren't their own) that they join an autism forum and ask if they should seek help from a professional ought to seek the help of a professional, period. Our function as a community should be to support them in doing that, no matter how their question is phrased.

In other words, the question "Does X and Y and Z behavior indicate autism?" usually means "Should I have my child assessed for autism?"

My own philosophy is the diagnosis is unnecessary unless either the parent is seeking financial support for services or their child wants to know. The OP indicated their son has friends and is happy, Sounds like the the main impetus for getting a diagnosis is that the boy drives the parents around the bend.

I understand your philosophy; to each his own. ( I would never suggest that anyone who doesn't want one seek a diagnosis, and there are ways, if you know what you are doing, to get the services you need without one - but you have to know what you are doing first.)

What I am trying to point out is that we have no way of knowing what is actually going on when a parent makes a post like this, and there may be consequences to taking them literally or at face value.

All we do know is that the poster took the time to seek out a group that self-selects exclusively for autistic people or autism-friendly parents of autistic people to express their concern. This takes a fair amount of time to research and then the commitment to create a profile and post the question. These things indicate to me that the poster has serious concerns specific to autism, whether or not they are expressing those concerns exactly right. We are not professionals and don't know the poster or their child, and will never have enough information via an online forum to know what is really going on.

You are right, there's not information listed in the OP that enables anyone to diagnose autism, but there also isn't enough information here to rule it out.

If you had asked me when we started seeking a diagnosis whether or not our son had friends and was happy...and if we were looking for help primarily because we were struggling to parent him, we'd have had to say yes to both things. We had no way of knowing at the time how desperately my son needed communication therapy and other supports that came to us via his diagnosis.

Had we gotten a diagnosis and appropriate supports earlier, we probably would have avoided the years of violent, suicidal behavior that finally brought us to WP; I don't wish that on anyone. The diagnosis and label probably saved my son's life, and certainly saved our family.

The important distinction here is that your son displayed behavior that was potentially harmful and therefore required assessment and beyond that at least an exploration of treatment options.

The OP's son may indeed have reason to seek diagnosis but the urgency is somewhat diffused when the father states his son is functioning fine, has friends and is happy. We can probably cross off social functioning and self-harm as concerns.

I could, however, understand if there was a glaring issue (not mentioned by the OP) such as his son is not performing academically and they wish to pursue access to financial aid to support a learning disability.

OK, not to belabor the point, but during the time when we first started looking for help and could have accessed early childhood intervention services, my son did not display any of those symptoms. His only "behaviors" were dismissed as tantruming and being "difficult" (dismissed as things that "bothered" us as parents.) Had he received services when we began seeking help, I believe we have had tools to prevent the extreme violence, suicidal ideation, OCD like behavior that came later, after we'd spent years looking for answers. Our story is an illustration of how severe the consequences can be for someone who can "pass" as NT but who still needs support.

Many, many people with autism can "hold it together" but could still benefit from the supports offered to those whose difference is more visible. Many children don't get diagnosed with autism until their tweens or teens, and many others don't get diagnosed until they are an adult. This doesn't mean they don't need help, or couldn't benefit from help - and there's no way to know that without a diagnosis.

I think when loving parents do a lot to help a child cope and so do teachers it's easy for "glaring" to become fuzzy and seem like it isn't. When we and schools pay attention to how much we are accommodating a child's special needs then yes, there's no ASD unless there are glaring differences. It's just, sometimes we smoothe the edges of those glaring differences by finding ways around a child's difficulties. That's good, but it can disguise the need for a label and additional support. And sometimes everyone can be so good at this we may not even realize the extent or that there are alternatives.

That's my take on how Momsparky and Cyberdad are both right.

For me, another important factor is the age of the son. If he was a toddler or young child, I would be concerned that his current symptoms of ASD might be just the tip of an emerging iceberg. Since he is already a teen, and has successful friendships, I think he is probably more "quirky" than diagnosable.
IMHO, which was requested by the OP.

An interesting perspective. Early intervention funding for autism here in Australia is left to the parents to decide how to spend it. It amounts to a few thousand dollars over a few years and runs out quickly. Therefore whatever funds are available are spent to target presenting problems rather than potential problems.

Even if you had the resources to put an otherwise placid child through intervention that intend to minimise the risk of extreme violence or suicide in the future; the chances are that mental health professionals would advise against it. Whatever coping mechanism you provide to a child they would still be vulnerable depending on their predisposition to extreme behavior under stressful situations that manifest developmentally under situations that even "experts' can't predict. Sometimes the child has to experience this to know how to cope. It's like trying to use arachnophobia treatment for a child who has never seen a spider.

I think there is potential for being proactive. In the younger years it may be by addressing rigidity issues before they become too large a problem. In the teen years it might be by addressing things that could be employment obstacles, later.

If the horizon is clear and the child is happy and does not need answers for being different, then no need.

Edited for syntax and the like.

Last edited by ASDMommyASDKid on 19 Aug 2014, 3:44 pm, edited 1 time in total.

I think the issue is that without a label of an ASD a lot of the interventions used may not target the confusion, communication difficulty, or sensory issues a child with ASD is experiencing, and may be quite ineffective. Not a matter of potential problems. Really more a matter of identifying what the issue is and appropriately addressing. For young children, communication problems can often be contained by adults who take the time to understand and support a child. Without appropriate intervention, though, in whatever form, a child's communication deficits will often increase relative to peers when the child has ASD. That may seem like a potential problem, but communication issues are often the root of what seem like manageable issues in young kids that grow worse as they get older and are exacerbated by negative attitudes and behaviors stemming from years of feeling at odds with the world.

I think responses to my post assume that I'm looking for a diagnosis for every child with concerned parents. I don't - I think they need to get an assessment from professionals. Assessment is not treatment, nor is it diagnosis, any more than any other health assessment: if a parent posted to a forum of deaf people asking if their child should have a hearing screening and assessment, wouldn't the answer simply be "yes?"

I have a number of friends whose kids are now labeled "quirky" who had been caught very early as developmentally delayed and offered intensive supports in preschool. They remind me very much of my son - but it's clear to me that early intervention made a huge positive difference. They were caught not because their symptoms were different, but because they went to a preschool with an inclusion program, and all children were screened by professionals from the local health department, whether they needed it or not.

It's not that my son was asymptomatic - it's that neither I nor my pediatrician knew what to look for in a "high functioning" child (for instance, I had no idea that it was unusual for a child to need step-by-step coaching through crawling, clapping, climbing a ladder, etc. and it never would have occurred to me to bring it up, nor the rigid insistence on particular costumes, etc.) Autism is easy to miss in many children unless you know exactly what to look for. I think that parents may only have a vague sense and don't communicate exactly what needs to be said when looking for help. Had I known what to say, we'd have easily qualified for early childhood intervention.

In an undiagnosed autistic teenager, an assessment and diagnosis may give them time to learn communication they will need when entering college and the workforce. There are two whole boards for the adults on this forum dedicated to those subjects, and we have plenty of members who weren't diagnosed until much later in life. I think it's better to learn skills in school while supported by your parents than to try to do it while looking for a job and building relationships.

I'm not clear on what harm an assessment can do? At the very least, it would rule out autism if it isn't there, wouldn't it?

I'd like to propose that we ask to split this thread so it can go back to being about the OP. I think this is a conversation worth having in this community - what do all of you think?

What you are describing is an intervention/treatment for ASD itself! Currently there is no general consensus on what early intervention is best for a child with ASD. The closest thing we have is ABA to address these issues. Some cases parents will claim this "cured" their child of autism.

Your psychologist/health expert would put together an "individual" mental health plan that targets "presenting problems" which (usually) are social deficits for an Aspie child or communication skills for an autistic child. We spent our assistance money on speech therapy. Many (most) parents spend it on ABA treatment for their autistic kids.

Yes this seems to the point of conjecture. My child along with many others are picked up as autistic before they enter the school system. On the other hand there are plenty of kids who don't have presenting problems that warrant their parents seeking assessment. I guess the assessment allows a parent to make a more informed choice on whether to put their kid in a special class/school or organise with their mainstream school to get funding for individual support (an aide). Here in Australia the child has to be reasonably impaired (more autistic > than Aspie) to get support or to be admitted into a special school. We have a couple of Autistic schools in Melbourne but again there aren't enough places for higher functioning kids.



I've spoken with both the principals of the autistic schools here in Melbourne and they advised me to keep my daughter in mainstream school as their goal for their higher functioning kids is to develop sufficient coping and learning skills to move into mainstream school system. It's interesting that after many years the school's feel that mainstream schools are better for higher functioning kids. Special ed provides a warm caring and safe environment for their child but delays developing their critical life skills they need to survive independently in mainstream society.

Therefore the value of a diagnosis for a higher functioning child is limited My daughter is on the autistic end of the spectrum yet is coping ok in mainstream. Kids on the Aspie end of spectrum are far more advanced on making friends and as parents should be encouraged to integrate into the mainstream. The growing pains and teething issues, the frustrations and meltdowns can be addressed with or without an assessment.

In part, then, this distinction is political. In the US, a diagnosis does not mean placing your child in a SPED school - but without one, it is very difficult to access any supports or theraputic services. Most HFA or Aspie kids that I know (and even a growing proportion of Auties in our district) are placed in "inclusion" classrooms: that is, they are with the mainstream students but are offered accommodations and supports as needed. (This sounds great but is not without its problems, though IMO it is a preferred way to go as long as it's working for the child.)

Therefore, if your child needs speech therapy, OT, social skills classes or simply accommodations like extra time on tests or permission to use a fidget, etc. it is easier if you have a diagnosis - not impossible, mind you, but many school districts don't offer any special services to students who don't qualify under the definitions of the Individuals with Disabilities Education Act..and sadly they often place the burden of proof on the parents.

Yes this is the support model my daughter is funded for.


Yes this sounds not entirely dissimilar to Australia. The burden of proof is placed on parents because there is a limited pool of money to apply for. In the next 10 years the federal Australian government is rolling out the national disability insurance scheme (NDIS). In theory it's supposed to resource the gap in current funding and may also provide a support if parents or ggrandparents pass away. Unfortunately the scheme is still in the pilot phase and details about what it will offer are still being written. My guess is the critical limiting factor is how much money the taxpayer is willing to fork out.