Autism Purgatory
My man at the park, watching the other kids play.
What I hate in this world, in uncertainty. I can’t process or accept what is “not yet”. How can you? The finality and inability to change a situation is what makes acceptance not only possible but mandatory. How can I accept what, to me, is still unknown?
If you just started following me but didn’t have the time to read all the way back in my blog (who has time for other people’s drama, right? We all have lives!) I started this blog because my son is having some developmental delays, which may-or may not-be in the autism spectrum. It is becoming more and more frustrating to live in the “maybe’s”. I just want to know! I want someone to tell me definitively either way. If you think about it for just one moment, think of the feelings you would have if someone told you that your only child “may” have an issue that will affect their youth in a relatively dramatic fashion. Or they may just be a late bloomer.
Wait? What? Those are two very different things.
If he is a late bloomer he will just pick up language slowly but when he does (which would be by pre-K) he will fit in easily, make friends, play sports and no one would be the wiser that he wasn’t a big talker when he was young. If he has Semantic Pragmatic Disorder (also known as a Pragmatic language Impairment) there are obstacles involved that differ greatly from that of a late bloomer. They are just so different in their outcome that part of me just wants to know so that I can properly prepare. Pick the correct schools, therapies, classes, ect. Part of me is just tired of sitting around watching everything he does and viewing them as “signs” of something and not just spending my time enjoying his childhood as I should be.
If I was to be 100% honest, I truly don’t care either way. He will have a beautiful life no matter what some developmental specialist tells me. I will work tirelessly to make that happen. I don’t know why I am so obsessed with the answer, I just am. I can’t keep beating myself up for not being someone that ‘goes with the flow’ when it comes to my Jpeezy. I can manage to do it for any other reason on the planet with ease, but not my son. It is just not in me. But the answer doesn’t seem to be in my reach anytime soon and that is maddening in it’s own way.
The reason for this is at his age the test for autism is pretty cut and dry. It is too black and white to be conclusive for Jpeezy. His delay is not a simple case for anything.
This is the pre-questionaire sent out to me by the autism testing facility in my city:
Your child…
Does not respond to his/her name? Sometimes he does, sometimes he doesn’t.
Cannot explain what he/she wants. Sometimes he can, sometimes he can’t and is easily frustrated.
Has language skills or speech that is delayed. Yes, but not to a degree that is a dead giveaway. He has the ability to communicate but it is behind his peers.
Doesn’t follow directions. If the noun is familiar then this it is better. “Go get shoes”, “Come on”, “Go to the truck”. These are easier than say, “Put the car on the table”.
At times, seems to be deaf. Not deaf, certainly inattentive, but not deaf.
Seems to hear sometimes, but not others. Inattentive, but not deaf.
Doesn’t point or wave bye-bye. does, but has to be prompted (“say bye, Jp”)
Used to say a few words or babble, but now he/she doesn’t. He babbles incessantly, talks frequently but does “lose” words (you hear them once or twice but then they are gone again). He is a regular chatty Cathy with what he knows, almost to the point of crazy with the repetition.
Throws intense or violent tantrums. Certainly, not violent but frequent. He is two and is forming very strong opinions but his level of communication doesn’t match it. It is frustrating to want something specific and not be able to verbalize that.
Has odd movement patterns. Not at all.
Is hyperactive, uncooperative, or oppositional. Yes, yes, and yes. But isn’t that all toddlers?
Doesn’t know how to play with toys. This one used to be true (lined up cars and crayons, was uninterested in anything but cars) but now not at all.
Doesn’t smile when smiled at. Nope, he is a very funny kid. Full of laughter and brightness.
Has poor eye contact. Apparently, it’s inconsistent with strangers but with familiar people it is fine, if not perfect. It came off our list from the speech pathologist this month.
Gets “stuck” on things over and over and can’t move on to other things. Nope, he almost flits from activity to activity at times. Although when he is interested he will do the same thing over and over but not to a noticeably “odd” degree.
Seems to prefer to play alone. He has always been very independent and is equally happy playing with me or by himself. He brings me toys to play with him though gets easily frustrated when I don’t understand “the game”.
Gets things for him/herself only. Not at all, he asks for things incessantly. (*Side Note* literally as I am typing this question he just walked into the room with bread from the pantry for me to give him. :))
Is very independent for his/her age. Yes, as I mentioned, he is independent. But part of me thinks he is growing out of it because he seems to want to engage with me more and more.
Does things “early” compared to other children. Physically, yes. But language has been a big struggle.
Seems to be in his/her “own world.” Not really. At times, it is hard to get his attention but never to the point where it is a big deal.
Seems to tune people out. At times, yes.
Is not interested in other children. Interested but the play is still very parallel and not engaged.
Walks on his/her toes. Yes, but I did when I was younger, too. My grandmother is Native American and she literally called me, ‘Steps Lightly’.
Shows unusual attachments to toys, objects, or schedules (i.e., always holding a string or having to put socks on before pants). Not really, he goes with the flow pretty well, though in eating it gets a little weird.
Spends a lot of time lining things up or putting things in a certain order. When he was younger he used to line objects but now never. In fact, he spends most of his time wrecking things.
This is why I am reluctant to say that he is autistic. By that list, he doesn’t seem so, and it was suggested we wait until age three to reevaluate. Then the testing is more specialized to language and if the issues that we face now are still there, much more likely to be something other than a late bloomer.
This is a list of the symptoms of the specific language disorder, Semantic Pragmatic Disorder, that the pathologist thinks it could be.
Early Signs of Ages 0-4
• Quiet baby, content most of the time. Or a very difficult baby. Jp was a handful since birth.
• Likes playing alone repetitively. More when he was younger, less now.
• Difficult toddler with no sense of danger. Yep. But that is most toddlers.
• Does not respond to name, at times appears deaf. I would have to say yes to this one.
• Late talker, does not babble. Babbles and is a late talker.
• Speaks out of context, memorizing phrases of favorite tv shows. Memorizes phrases as a whole and doesn’t use the verbs universally.
• Inconsistent eye contact. Nope.
• Late pointer, unable to express wants. He was certainly late in this area. Still has some difficultly expressing wants.
• Fussy eater, refuse to eat certain textures. Big yes.
• A loner, prefers to play alone then with peers of the same age. Most of the time, yes.
• Late in recognizing self in pictures or mirror. Yes, he still doesn’t most of the time.
• Unable to initiate play with other children but will interact with in rough tumble play. Lots of chasing, very little communication with them or sharing or taking turns.
• Difficulty sharing, tantrums persist. Sharing with other children is a problem but with us, he’s great.
• Good with jigsaw puzzles, numbers, letters, shapes & colors. Um, he is a jigsaw puzzle master. Even I am impressed. Loves numbers and shapes to an obsessive degree.
• Prefers helping in real activities like washing up, or operating a computer. He loves all of those things. He would never give me my iPhone back if I let him.
• Repeats like a parrot. This one is true. He can repeat everything but can’t seem to do it as easily on his own. It’s hard to explain but I feel as though a lot of the things that he says he learns to gain a response but he doesn’t truly understand what the words mean.
• Obsessional interests. He likes to watch the same movies over and over, play with the same toys, read the same (one) book. But I think that is pretty typical.
• Very independent, does not ask for help. Asks for help all day long, almost to a level of insanity in the repetition department.
• Inappropriate response to sensory stimuli like touch, pain, sound. Not really, though he cries like a lunatic when his hands get too dirty. And he covers his ears A LOT. Not always when something is loud, either. Certain pitches-however quiet-seem to bother him.
• Difficulty in following rules. He is getting to an age where house rules are better but rules for a game or toy are totally lost on him.
So you see where I am stuck in limbo with this whole issue. The top test for me is a no brainer that he is NOT while the second set of symptoms coincides quite a bit. So I live in autism purgatory. I don’t want to accept that he is in case he isn’t and I don’t want to ignore that he may be so that I am understanding of all his ‘quirks’ (too many to name and this post is long enough already!).
No one said parenting would be easy, huh?
*For those of you that actually made it through this post-I wouldn’t blame anyone that couldn’t it is quite involved-I would love to hear some feedback from all sides. People with children with autism, parents of kids without. Since he is my only son and I have only worked with children with emotional and mental disabilities, I am afraid I just don’t know what “normal” development looks like at home! I would love any advice that anyone has to offer!
Childhood Development Parenting Parenting and Childhood Development autism development family late bloomer late talker moms parenting semantic pragmatic lanhuage disorder toddler
Three Flew Over the Cuckoo's nest 
Wow! I had no idea how confusing the process for identifying an autistic child could be. A lot of those things are behaviours I have seen many kids, my own included, exhibit from time to time. I can see why this is so hard for you. I think maybe, try to let it go for now and just do what feels right with your son. The time will come when a definitive diagnosis will be available to you but until then if he is happy let him be just that. I think if he is too young for anyone to be sure than he is too young for any action to be taken anyway. Not to simplify it or take away from your fears but for your own peace of mind try and let him just be.Enjoy him without needing the label. I know, easier said than done. Good luck to you.
I know, I know. I wish that I could just never think about it again. I know that the diagnosis wouldn’t change anything for me, the way I love my son, the person that he is…but part of me just hates the uncertainty of the situation.
In these throes of over-analization (which I purge on my blog more than I do in my life-I promise, I am not sitting around obsessing about it anymore but the thoughts do come up and this is my medium for expression) I wish the Speech Pathologist had never told me. Life was simpler then. But no matter what happens with his speech, he really is a great kid. He’s funny and loving and one of the cutest kids I know (biased, much? lol)! Thank you for your reply!
Its always easier to give advice. I’m sure I would worry just as much as you. In fact I have had sleepless nights because I couldn’t shut my brain down from imagining things that could possibly happen to my kids. I think its the curse of motherhood. We worry when there is a reason and when there isn’t.
Worrying is what makes us good parents, I like to think. It’s the ones that don’t care that worry me 🙂
I wrote a post about that very premise. Its so very true. 🙂
I know exactly how frustrating it can be not knowing. I don’t think people realize how much of a relief it is just to have an answer – a direction to head in. My oldest was diagnosed just before his third birthday, but I’d been insistent that something was wrong for two years. Nobody wants their child to have a developmental delay or disability, but it’s better than walking around not knowing anything. At least with a confirmation you have direction. You have a starting place – not just blind alleys full of questions. There will always be questions and there’s always going to be something that just doesn’t make sense, but at least, for me anyway, just getting confirmation that I wasn’t crazy was a huge sigh of relief.
Thank you! I know I shouldn’t care, but I care, I know it shouldn’t matter, but it does. I try to convince myself to stop thinking about it but then he covers his ears for 15 minutes for seemingly no reason (I say ‘seemingly’ because I am sure there is a very valid reason for the action I just have yet to figure out what it is.) and there I go again! I want SO BADLY not to care but I do. I feel crazy sometimes. It is so nice to know someone else went through it.
I don’t know if you had a chance to read any of my older posts but I had no idea ANYTHING was wrong outside of a slight speech delay but as a take-action-mom I put him in therapy before the pediatrician suggested it just so he wouldn’t fall too far behind. The pathologist is the one that clued me into the possibility. Now, as that same take-action parent I want, as you said with sheer perfection, to have a starting place. It could not have been put more eloquently. Thank you.
I scrolled a bit, and completely get it. Mine both have a laundry list of problems a mile long, but aside from night terrors, my biggest initial concern was his speech. His pediatrician kept assuring me that it was normal to have a delay – so I took him to a different doctor. When they evaluated for speech they threw in OT and I was totally baffled. I had no idea that so many of the things he was doing weren’t “typical”, I just figured he was quirky (I mean, I kinda expected that out of my kid!). Nobody wanted to hear me. For over a year I had to fight everyone but the therapists and doctors – our whole family just kept with the “you’re overreacting” approach until I finally came unglued.
I’ve bought more books than I knew what to do with, read research papers and studies, drove all over the state to see specialists before finally getting a diagnosis. Now we’re going through the same thing with my youngest – only at least this time the biggest nay-sayers are now the biggest supporters which helps. Having a title, a label, whatever you want to call it, isn’t a bad thing – it’s a relief. People stop fighting you and start listening. You know what books to look at, what papers to read, where to go for help. I think you’re awesome – I’ve met plenty of parents who have pushed it aside because they didn’t want their child to be “different”. Personally, I think “different” is better than “just like everyone else”. It certainly gives you a new perspective on life.
You have a very lucky little boy!
It means the world to read this post, it actually made me tear up a little bit. It is so hard when everyone is telling you to relax and you just can’t…and to hear someone say that they feel Jp is lucky to have me..well, that is just icing on the cake. Thank you so much for your words of support and for sharing your story with me. Your boys are lucky to have YOU!
I didn’t think anything was wrong with my son for the first two and a half years. Then he started preschool and there were obvious signs but I felt very defensive when the teachers would say anything. As his behavior icreasingly became more severe, I went further I to denial. Thank God those days are over. In the autism evaluation, the psychologisst asked me so many questions and I learned that my son had a language delay and I didn’t even realize it (he did a lot of echolalia) and so many other autistic traits that he had that I had grown accustomed to. Sorry fortypos I’m on my kindle. It wont hurt to get evaluations done and will put your mind at ease knowing one way or the other.
Thank you for sharing your story with me, it is so brave. I, too, struggled with denial in the very beginning. I had worked with autistic children all through high school so I thought I KNEW what autism looked like, and that was not my son! Little did I know they had broadened the parameters of autism in the last 15 years.
As for growing accustomed to the “autistic” traits, I was just like Desiree, I am a quirky person so how would I expect my son to be “normal”? I knew he was a funny kid but he was MY kid so that was to be expected lol!
Holy smokes Amber – how are you so “together”?! I feel like I would react in the same way as you in that I would be obsessed with having a definitive answer but once knowing it, would make no difference as your child is your child and you will sacrifice anything to give them a happy life. You are so strong and I admire your outlook on the situation.
Thanks for saying I seem together lol! I have had a little time to process on my own as this started in November. When she talked to me I was crazed for about a week. It took me a little while to understand that it doesn’t really change anything but I got there. Or I am getting there, however you want to look at it. No matter what, Jp is my whole world and no matter what our path I will follow it and we will do it with a smile. It’s not ALWAYS our choice the hand that life deals us but it is our choice how we play it.
Thank you for saying I am strong, I worried that this post would show serious “weakness” lol
I have been there! I think a lot of us have been (since the waiting time between calling for the appointment and GETTING the appointment at the Autism Centers is sooooo long.) Autism purgatory is exactly what it is! And it sucks! All I can say is I was a slave to those checklists, too. My son didn’t fit all the “criterion” and even after his diagnosis we were in disbelief. Now, we have accepted his diagnosis and the therapies (and newfound patience it has brought us!) It is easier (for us) to know he has a neurological disorder than to just think he “isn’t listening and being defiant!” I’ll have to catch myself up on your blog, but it seems to me you are doing everything you can to the best of your ability!
Thank you! Since I wrote this post initially he has been diagnosed with a receptive language delay so now I know that he isn’t being “willful” and it has done wonders for my patience levels! Though his expressive is higher than his receptive (???) so at times, it is easy to forget. 🙂
Thank you for reading and taking the time to share your story with me. I have found so much comfort in writing this blog and finding moms that have been through (at the very least my son has a developmental delay) similar issues as myself. It has been a godsend to know that there are other parents out there struggling to get every piece of food in, staying up until all hours of the night, and as focused on language and communication as I am lol!
The great thing about autism and other cognitive and behavioral-based therapies and treatment strategies, is that while they may be necessary in dealing with children with special needs, they are great for ALL children. ABA therapy is very similar to child training techniques taught in Christian parenting books. Language-based activities done in speech therapy are fun and effective for ALL children. All children benefit from being specifically taught social skills like eye contact, sharing, turn taking, etc. I think if you assume he’s on the spectrum and work with him accordingly, you can always back off if he catches up and the diagnosis is ruled out. That way, you’ll always stay ahead of the curve. I hate it when people try to tell me that part of my son’s problem is that he just didn’t get started in therapy early enough. It’s a total cop-out, but I always wonder. I would caution you, though, don’t lower your expectations of his behavior. Even if you have to use hand-over-hand assistance to do the things you tell him to do, do it!
Never reward your child for bad behavior is a great rule although occasionally we all break it. That means, at all costs, if your child throws a fit or behaves badly in order to get something, make sure he doesn’t get it. If you’re willing to sit with your son before he goes to sleep, sit with him when you first put him down and then say good-night. Otherwise, put him down, say goodnight and then leave. No matter how much he hollers, don’t go back and sit with him. I would also try offering him a reward for the first night he goes to sleep without yelling, and put it somewhere in his room where he can see it but can’t touch it until he earns it.
If you can take care of the behavioral issues, you’ll be able to get a much clearer view of and much better access to the cognitive issues.
Hope I didn’t offend you with all this. I’m sure if you came over to my house for an afternoon, you’d have a laundry list of advice for me too.
Blessings – and hang in there!
Alyson
No, I would never be offended by someone offering invaluable advice! One of the most difficult parts of raising an atypical child is the lack of information available so I truly appreciate all of the kind words and pearls of wisdom.
I have my struggles with behavioral issues, I just am a bit of a pushover to begin with, and now that Jp is getting bigger I know that I need to address them head on. My biggest clue is that he listens (better at least, as long as the requests are simple) to my husband so I know that I have to stop letting him get away with murder!
I have been more firm this week with bedtime and it has gone much more smoothly, thank goodness. 🙂 Thank you so much for taking the time to give me advice and never worry about offending me by giving it. It is part of the reason I started this blog, to share experiences and learn from others in my situation!