Parent with a newly diagnosed child - what if you doubt?

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Hi all!
I’m new to the board. Really curious to see if anyone else has a child like ours, as it would help us help him more with the struggles he is facing.
Our 4 year old son was recently diagnosed as having an autism spectrum disorder, as well as speech delays. As both of us have encountered ASD in both our personal and professional lives, we understand it can present itself in a myriad of ways, but despite this, we are still struggling with whether or not he truly meets the criteria, and we want to see if anyone else can relate to our experience, in the hope that it will be informative for our son.
Some background as to our doubts out the diagnosis, as we are trying to determine if our son isn’t simply reacting to external factors: About a year ago, two major life events occurred: the untimely and unexpected loss of his uncle, and the occurrence of a new pregnancy. Prior to these two events, other than some speech delays, he seemed to be progressing quite well in terms of milestones and behavior. Immediately following this death and the subsequent pregnancy, his behavior began changing. All of the sudden, he was getting aggressive with others, when previously he’d always been extremely gentle and sweet, began throwing temper tantrums, stopped potty training, all together, and he now requires pull-ups around the clock. He continues to have speech delays and is far behind peers in this area, but overall his new behaviors have changed him so much. He is still our sweet little angel much of the time, but when he becomes enraged, it’s hard for everyone because he does not calm easily.
We assumed this was all in response to dealing with the trauma of death, so we thought the phase would pass. To be safe, we had him tested in his school district. he was diagnosed with a speech delay as well as being on the Autism spectrum just shy of his fourth birthday a couple months ago.
He recently started the PPCD program at the corresponding school in our area. He has made improvements in the language department but the other issues (potty and behavior) seem to actually be getting worse.
We are a bit conflicted, as we can see how some of his behaviors support that diagnosis, while others seem to veer strongly away from meeting the criteria, so we made a chart showing features of his personality that both support and contradict an ASD diagnosis. The chart won't quite paste into this field correctly, so going to re-organize the best I can.


Supports
Isolates self, plays well on own, often prefers play alone, not share
Potty training delays
Extreme mood swings/overblown reactions to stressors
Speech delays, echolalia
Argues, resists commands
Mislabels own emotions (but often as a means of arguing so seems deliberate possibly)
Heavily sensory, pets people and objects
Perseverates, becomes fixated on certain plans, scheduled item he looks forward to
Comfort in parts of routine especially beginning and end of day
Certain sounds, music upsetting
Occasional “odd” movements
Wont pretend with others
Hits, tantrums, scratches, throws things


Goes Against
Often asks for company and attention and readily engages in interacting with others during play
Was on par to do on-time last summer, regression began with new pregnancy
Usually triggered by feeling micro-managed/over-scheduling often makes him feel stifled, as he likes to decide what to do in spur of the moment
Recollection very good, good retention
Often just trying to outsmart adults, clever responses to commands – just wants to get his way
Understands, cares about other people’s feelings, heavily empathetic
Makes eye contact readily
Wide array of tastes, very diverse in what he will eat
Interests come and go – intense for a time but comes and goes, never entirely consistent, and can be distracted with other things
Prefers routine but can adapt to some degree
Loves some music at times, hums frequently to self while playing, mood makes difference
Likes to dance, and often in very coordinated ways
Has memorized dance routines
Actually spoke his first words early
Learned ABC’s and numbers early
Engages heavily in imaginative play since age 2
Very loving, affectionate, cuddly, enjoys tickling, wrestling


Our concern here, is that the PPCD program may be working with him under an assumption that isn’t correct, which in the long run will harm, not behoove him. But we don’t want to be in denial either, so anyone who can relate to our story & give us some helpful insights, we’d really appreciate it.
We want to do the right thing for our little boy.

If you are concerned that your son is misdiagnosed and you think it's only environmental factors that are attributing to the symptoms, go get a second opinion. Take your son to the professionals and have him professionally assessed because they are more qualified. Also if his symptoms are inconsistent like for example he seems fine at home and shows no evidence of autism but in school he does, then you have a reason to question it.

Also being diagnosed in the school district is not a real diagnoses, it's only a educational diagnoses, it's not a medical diagnoses. What happens is when a kid is diagnosed through the district, it stays in those records through school and then they are destroyed, same as for the testing results. But the label can still affect the child if they are not autistic because it will limit their career choices in high school and teachers will lower their expectations for your child because they will look at your kid's IEP and see he is under ASD and see him as autistic and treat it like it's a real diagnoses.

^^^ Agree.

You say or imply you are both professionals, so do the reasonable thing and pay for a professional (medical) diagnosis, or try to get your health insurance to pick it up.

Unfortunately, you probably have many battles with public schools ahead. Good luck.

Thanks for the responses. I thought as much. I think we just needed the validation that a second opinion is needed. Unfortunatey we don't have insurance as I just lost my job. The school I teach at is closing. It's a priority as soon as we can.

And I totally agree with the battles ahead with public schools. I sense they've already begun. Hard to hear, but totally expected.

Thanks to you both.

What comes to my mind when reading the chart is pathological demand avoidance syndrome, you may want to read about it.

I wouldn't overestimated the effect of his uncle death when he was 2, and a new pregnancy, he could get stressed about it, yes, but the behaviour he displays clearly shows there is something going on.

Hope you will be fine though.

I'm not a professional. However I agree with the poster about "Pathological Demand Avoidance" (PDA -- couldn't they have used a better acronym?) being a good possible match, so reading those lists and therapy approaches may be more helpful than trying to match your son with lists re. any other general type of autism. The UK seems to have more recognition of this as a "flavor" of autism than some countries; I felt like I saw my brother's childhood in the list of symptoms.

What I remember of the description: the refusals and arguing are a way to deal with fear of being overwhelmed, rather than using repetitive behaviors etc. like with many other autistic folks.

Having good abilities with storytelling, fantasy, etc. are in the description too, they are not things that rule out this form of autism. However understanding of the "real world" can be more tenuous than with some folks; it can be a shallow understanding, not exactly reality-tested in a way that is adaptive as an adult. Manipulating others can fit in there if not addressed, it might work as a kid for a while, but he might have serious issues with that later if he uses that approach (ok, I'm projecting my brother's life onto your son, sorry... however he was a child 40 years ago, got no appropriate treatment).

Art and fantasy abilities can be such a strength!

So, if this is actually fits, finding therapists etc. who understand his "flavor" of autism could be really helpful.

I agree about the medical diagnosis. I would definitely go get that- AND do your homework. Call around and ask the receptionist who on their staff has training in diagnosing childhood autism or sees a lot of autistic patients. If they're like "huh?" call someplace else. You may possibly have to drive a couple hours to see someone, but I would do that rather than wonder if the diagnosis is correct.

You could also see if there is a way to test his intelligence. I don't really believe in IQ tests, but some of what you're saying sounds typical of a gifted child to me. A gifted child will sometimes manipulate you out of things that they don't want to do. So it may seem like they "can't" do something or that they are reverting, but really maybe they just don't want to.

I would also spend some time thinking about what it will mean if the diagnosis is correct. Do you agree with whatever educational plan your child's school has? Are you going to change anything in your routine or home environment to be more friendly to his kind of autism? Will having a different way of talking to him help? For example, after my husband was diagnosed, I realized that he was not making fun of me when he was asking me questions about some things, so I stopped answering questions with sarcasm and started answering clearly.

It was thoughtful of you to question this diagnosis in the first place. I think it would help you in figuring this out to keep reading and posting here in the adult forum, but you should also check out the parents forum. They should have more experience directly related to what you're going through.

I really appreciate everyone's thoughts and time. I'll definitely be sticking around here. Thank you!

Just a head's up that PDA is only recognized in the UK as a condition. Everywhere else it is unknown. I am not sure what happens to kids here in the states or everywhere else. I suspect they get misdiagnosed with a behavior disorder and it sounds a lot like ODD to me.

If your son is functioning fine intellectually (which it seems he is), and can communicate (which it seems he can), and you don't have money for second opinion right now, I would not put him into any special programs for autistic children. He may appear to benefit over time, but the benefits may be from time instead of the programs. They may also be harmful, if stressing him out, or not right for him. If you continue to doubt the diagnosis, you could just raise your son as himself without attaching the autism label to him, basically consider his traits his individual traits, and help him adapt better while keeping who he is.

Whether the program will help or hurt often has little to do with the accuracy of the diagnosis. I've heard of kids with ADHD, FASD, various other issues benefiting from programs designed for autistic kids, and I've also heard of autistic kids who had autism programs do more harm than good.

While it would be good to know for sure if he's accurately diagnosed, what really matters is that you pay attention to how the treatment's going. Does he seem to enjoy the program? Does it seem like what they're working on are really the areas he's struggling in, or is the program too easy or hard? What do your instincts tell you about the quality of the care he's getting? Also, get copies of recent assessments, and write your own notes on what he can and can't do - then compare that to a few months from now. Most kids will progress regardless of the treatment, but if it's working, you should see a faster progression than expected.

Thanks to the last couple of responses. Both speak to a key concern we have which is that we aren't truly happy with the program. The tricky thing is, he is. He looks forward to going. However, they do a lot of squirrely things and tend to get defensive when called on it. We're supposedly in the "best district in town", but I don't know. Our instincts are screaming at us that this is not the best fit for him. His behavior has worsened since starting it. For the sake of stability, we've thought we should let him finish the school year since it's just another couple of weeks, but we are deliberating on whether or not to go back.

Thanks again for everyone's time. The different perspectives are helpful.

Go observe the classroom on a few different days. While there, sit quietly watching the behavior of the teachers, your child, and other children. That will tell you a huge amount.

Frankly, I've never been denied access when requesting to observe my kids in school. As long as you don't sound legalistic or critical when you ask it, they'll probably allow it.

What type of program is it? How are the kids acting in there? How functioning are they? Are they cognitive delayed or functioning at a lower cognitive level? Your son could be mimicking the negative behaviors he sees in that class. I would go with what the poster above me suggested. I would also ask if it's possible he could be video taped in class so you can observe him in that class and how he does in there and what the whole program is like for him if it would be too much of a distraction for you to be in there.

I definitely agree that you should take these last few weeks to observe first-hand. The programs could be helping even while you are seeing worse behaviors at home just on the "let Mr. Hyde out" principle that you get even with typical kids. They give school their best, and you get what was bottled up and what's left over because home is the safe place. Whether that's the case or not, there's nothing like seeing what goes on first-hand.

As to whether ASD is accurate or not... Oh God, it's so hard to tell, especially in the "higher-functioning half of the spectrum" and especially when they're so young. It could be a reaction to stressors in an anxious/PDA kid. Then again, it could be an autistic kid reacting to stressors they don't have the skills to deal with appropriately yet. I know even on me, and I'm fully grown and as functional as I'm gonna get, extreme stressors (deaths, illnesses, long-running arguments, new children, moves) tend to bring out more autistic behaviors than what I display in normal times.

No matter how you cut it, you're obviously both intelligent and knowledgable. Use your eyes, use your ears, use your brains, use your instincts-- you're going to figure this out.

I wonder how one can tell between an adjustment disorder or if it's just autism because the person can't deal with the stress factor well as most people can because they don't have the skill? Or is an adjustment disorder part of autism?

I know I don't handle stress well and my symptoms also show during stress factors and even non stress factors that won't be stress factors for most people but are for me will bring them out of me too.