ASD, SPD, spirited child or just 'being a toddler' ??

[Lottie]

Hello there

I'm starting the quest for an evaluation for my DS, who is 21 months old, by going to the family doctor to ask for a referral. I want to make sure I ask the right questions and give her the most pertinent information and not be dismissed as being over-anxious and paranoid. I guess I want to make sure i'm not actually being those thing too!?

I realise that only a skilled professional with experience can diagnose but i just wanted to see if any of you wise knowledgeable mamas could tell me if my concerns sound valid, and also exactly what kind of referral i should ask for? What kind of specialist should i seek? Hopefully my family doctor will have suggestions but my experience is that sometimes its best to know what you want in advance to avoid being brushed off or told to wait and see.

My instincts (and the sheer intensity of his behaviours) tell me that there is somehting going on with my son that is more than the typical toddler issues. He has always been spirited and scores very high on all but one of the categories of 'spiritedness' from the 'raising your spirited child' book. I have looked into SPD and wondered about it because he is so sensory seeking in some ways and highly sensitive in other ways. But lately he has been more challenging than ever and I recently found out that some of the little quirks he has (tiptoe walking/hand leading/not looking where you point/extreme self restricting of diet) are sometimes associated with ASD. I know that many kids have such traits and it doesn't mean they have autism. But he ticks quite a few boxes to varying degrees and yes, i took some of the clinical screenings online and my heart sank. 

He has always had terrible sleep, has begun to self limit his diet to the point that he will only eat very few foods (all 'white' dairy and carbs if i didnt relent and give him what he will eat i'm sure he'd starve because when i offer other more wholesome foods he acts like he doesnt believe its food (!), throws it and will. not. eat.it. no matter how hungry),  he has strong obsessions with tv and cell phones and remote controls and an amazing talent for operating them, he has incredible balance and strength but no sense of danger or caution and will free fall assuming you will catch him whether you are ready or not. He does make eye contact but its hard to establish and he does not initiate it. He does not look over when you point to things and does not 'show' us things by pointing but he does gesture to what he wants with his hand and occasionally his index finger. He s very single minded and relentless when he wants something, and cannot be distracted or re-directed when he has fixed on somehting he wants.

He has a language delay and has only ever had about 8 (kind of) words (he communicates mostly by 'hand leading' and gesturing. He has had an evaluation by a speech pathologist and has been referred to a program for this delay but the wait list is long. Since that appointment he is using even fewer words. (I am getting him in for some help with a private speech language therapist while we wait). 

So there are some areas of concern but because he laughs and hugs and giggles and loves to wrestle and run around with his sister and be tickled and plays peek a boo and pushes trains and cars around and looks at books and greets and waves bye to people I'm really confused. Would these things rule out ASD or can they be part of the spectrum if other autistic traits are present?

Please forgive any misconceptions or ignorance I am just starting down the path of learning about all this and there is so much I dont know!

Anyway any thoughts on my rambling greatly appreciated and to anyone who replies thank you so much for taking the time.  

Lottie 

[QueenOfTheMeadow]

Originally Posted by Lottie 

Hello there

I'm starting the quest for an evaluation for my DS, who is 21 months old, by going to the family doctor to ask for a referral. I want to make sure I ask the right questions and give her the most pertinent information and not be dismissed as being over-anxious and paranoid. I guess I want to make sure i'm not actually being those thing too!?

I realise that only a skilled professional with experience can diagnose but i just wanted to see if any of you wise knowledgeable mamas could tell me if my concerns sound valid, and also exactly what kind of referral i should ask for? What kind of specialist should i seek? Hopefully my family doctor will have suggestions but my experience is that sometimes its best to know what you want in advance to avoid being brushed off or told to wait and see.

My instincts (and the sheer intensity of his behaviours) tell me that there is somehting going on with my son that is more than the typical toddler issues. He has always been spirited and scores very high on all but one of the categories of 'spiritedness' from the 'raising your spirited child' book. I have looked into SPD and wondered about it because he is so sensory seeking in some ways and highly sensitive in other ways. But lately he has been more challenging than ever and I recently found out that some of the little quirks he has (tiptoe walking/hand leading/not looking where you point/extreme self restricting of diet) are sometimes associated with ASD. I know that many kids have such traits and it doesn't mean they have autism. But he ticks quite a few boxes to varying degrees and yes, i took some of the clinical screenings online and my heart sank. 

He has always had terrible sleep, has begun to self limit his diet to the point that he will only eat very few foods (all 'white' dairy and carbs if i didnt relent and give him what he will eat i'm sure he'd starve because when i offer other more wholesome foods he acts like he doesnt believe its food (!), throws it and will. not. eat.it. no matter how hungry),  he has strong obsessions with tv and cell phones and remote controls and an amazing talent for operating them, he has incredible balance and strength but no sense of danger or caution and will free fall assuming you will catch him whether you are ready or not. He does make eye contact but its hard to establish and he does not initiate it. He does not look over when you point to things and does not 'show' us things by pointing but he does gesture to what he wants with his hand and occasionally his index finger. He s very single minded and relentless when he wants something, and cannot be distracted or re-directed when he has fixed on somehting he wants.

He has a language delay and has only ever had about 8 (kind of) words (he communicates mostly by 'hand leading' and gesturing. He has had an evaluation by a speech pathologist and has been referred to a program for this delay but the wait list is long. Since that appointment he is using even fewer words. (I am getting him in for some help with a private speech language therapist while we wait). 

So there are some areas of concern but because he laughs and hugs and giggles and loves to wrestle and run around with his sister and be tickled and plays peek a boo and pushes trains and cars around and looks at books and greets and waves bye to people I'm really confused. Would these things rule out ASD or can they be part of the spectrum if other autistic traits are present?

Please forgive any misconceptions or ignorance I am just starting down the path of learning about all this and there is so much I dont know!

Anyway any thoughts on my rambling greatly appreciated and to anyone who replies thank you so much for taking the time.  

Lottie 

Hi Lottie!  Welcome to MDC and the special needs parenting forum!

As far as being affectionate and the other things you listed, he could still be on the spectrum.  There are such a huge range of behaviors and combinations of behaviors that fall into the spectrum that sometimes it can be so confusing!  I think there are some red flags in the things you are listing, but that being said, there are other learning disorders that could also be the cause for some of the symptoms you are seeing.  I think it's great that he is in speech therapy and I would touch base with the ST to see if they notice anything that would indicate other concerns.

[nigellas]

I don't think you would being "over-anxious and paranoid" to get him evaluated.  :)

[Lottie]

Thank you so much for the welcome and feedback, I've found a Speech Language Pathologist who works for a local agency (who are covered by our insurance, phew) who seem very good and they are calling me tomorrow with an appointment, and it will be soon so it feels good to get things in motion rather than wait for the ST program in the fall that we're waitlisted on.

[Linda on the move]

I don't have a clue how things work in Ontario so I feel I can't be much help. However, there is a really wonderful call "Quirky Kids: When to Worry and When Not to Worry" by Klass that you might find helpful. I really love this book.  http://www.amazon.com/Quirky-Kids-Understanding-Helping-Doesnt/dp/0345451430/ref=sr_1_1?ie=UTF8&qid=1342506067&sr=8-1&keywords=quirky+kids

I think that it can be difficult to distinguish between normal toddler behavior and red flags -- some times it's just a matter of how intense the behavior is. There are a variety of diagnosis, some of which you've most likely never heard of. My DD is on the spectrum, but we have a friend from her school who has many of the same traits but is uber social. He's DX is "nonverbal learning disability." You really don't have to figure it all out -- that is what an eval is for!  The fact that he has some solid social behaviors is a good thing, even if he does have some mild special needs.

I also think that the line between "quirky" and "special needs" is a very fuzzy line that mostly means how well a child is doing compared to our society's expectations for a person their age.

[baltmom]

I'm just a couple steps farther along so I don't have as much to offer as many parents here, but just wanted to add that in our quest one of the best things I've done was to insist - insist - on a referral to a developmental pediatrician. Through observation and talking with you about the big picture, they are able to help sort through which behaviors may start to get in his way, and give you suggestions for specialists to help give him the tools to manage them. Regardless of having or not having a diagnosis of anything, good intervention just helps. I agree it sounds like your son has lot of wonderful strengths, and one thing I always do with my son's docs and specialists is remind them that it's very important to me to take the approach of building on his strengths, rather than focusing on any perceived "deficits."

[LynnS6]

Originally Posted by baltmom 

I'm just a couple steps farther along so I don't have as much to offer as many parents here, but just wanted to add that in our quest one of the best things I've done was to insist - insist - on a referral to a developmental pediatrician. Through observation and talking with you about the big picture, they are able to help sort through which behaviors may start to get in his way, and give you suggestions for specialists to help give him the tools to manage them. Regardless of having or not having a diagnosis of anything, good intervention just helps. I agree it sounds like your son has lot of wonderful strengths, and one thing I always do with my son's docs and specialists is remind them that it's very important to me to take the approach of building on his strengths, rather than focusing on any perceived "deficits."

Yes, please get an evaluation by a developmental pediatrician. A speech language pathologist is NOT qualified to diagnose autism or even SPD. Ideally, you'd be able to get your son evaluated by a team -- developmental pediatrician, speech-language pathologist and occupational therapist. It's a pain to get started, but if you can get into a place that has that kind of team, you'll get a much better picture of what's going on.

It's a myth that children with autism aren't social or don't express affection. Your son has enough red flags that I think it warrants a further investigation.

[Kuba'sMama]

Hi. I'm in ontario too and my dd sounds very much like your ds emotionally (physically she is the opposite of spirited )we have started the process about 2 mos ago (at her 2 year check up). We also did the online tests and diid other research. Our doctor didn't give us any problems at all. He listened to our concerns, asked his own questions and gave us referrals to a speech therapist and developmental ped. We have started seeing the speech therapist already and will see the dev ped in mid august. How it works its 2 sessions in two consecutive days. At the end of the second session we should get a diagnosis. Once that happens we get access to all kinds of programs and therapies. I'm not sure where in ontario you are but if in the gta and not happy with your ped, pm me I got a great one.

[fizgig]

I will third the suggestion that you push very hard for a developmental pediatrician evaluation.  It can be very, very hard to tell the difference between language disorders, spd, asd, and other developmental issues.  A good speech therapist can certainly help you figure out how to work with your specific child's strengths and weaknesses on language issues but otherwise they simply aren't qualified to give you the big picture and could quite possibly miss something medical.

We were exactly where you are when DS was 2-3  years old.  It is only now that he is 3.5 that we are getting a real picture of what's up since it can be hard to pull apart the pieces when they are younger.  After a looong series of evals (almost 5 hours) with a good dev ped, it looks like DS is not on the spectrum and instead has MERLD.  But that wasn't really clear until recently. 

Two books I will highly rec since they can help no matter what is going on: "It Takes Two To Talk" and "Play To Talk."  Both have made a huge difference in the way we interact with DS and have definitely helped his language and social development.

Incidentally this issue is very confusing and messy right now because even the experts can't quite agree what it means for a child to be on the spectrum.  The diagnostic criteria are changing and there is a lot of debate about what the spectrum even means.  My point being, getting a specific dx isn't really the issue.  Finding someone who can help you accurately evaluate your specific kids' needs and help you figure out a roadmap for your child is what a good dev ped can really give you.   

[Lottie]

Thank you all, so much, for your very helpful answers and suggestions, i'm just checking library and amazon for the books recommended.

We are just starting with a new speech therapist tomorrow and a developmental pediatrician is what I'll be asking for a referral to but first we are referred to our regular pediatrician again who was amazing when my daughter had neonatal seizures, she's very thorough so i feel that she will be able to point us in the right direction as we figure out a 'roadmap' for the way forward.

it's actually been a much better week than the last few maybe because i've relaxed a bit now i feel like i'm acting on this and not just having a gut feeling thats bothering me, if that makes sense

thanks ladies!