Parents with kids on the Spectrum...Please help!

Hi all,
I am after some opinions from parents of kids on the spectrum. This will be long as i try to explain so please bare with me...
We have recently finally seen a peadiatrician and were given a 'diagnosis' of OCD with Speech Delay. Not to bother with any form of treatment...just to ignore it basically. This came after an absolutely shocking appt where he did not interact with our DS at all aside from saying hello and then glancing at him a few times (where DS did not respond and promptly covered his face) The whole appt this Dr did not listen to what we had to say, ignored what we felt were key points, wrote things down wrong and was more interested in telling us about his 80 year old uncle with Aspergers and comparing our son to his Autistic son who by the sounds of it has very severe classic autism.
For example..we told him about our DS having good language development then from the age of around 20 months lost it all (as well as knowledge) to the point where he did not even say mum anymore...he did not speak many words at all until over the age of 3 and now is improving but is still delayed. Once we spoke of this the Dr proceeded to tell us his son didn't speak till 6 so why worry. We had a speech assessment done 6 months ago and it showed on the line he was almost in the most severe catagory..of course that has changed now he is talking more. I asked for a referral to Speech the Dr however told us not to bother with Speech Therapy because his son only learnt 1 word in 3 years...it's a waste of time and i was not given one. As with OT...DS has many delays in both fine and gross motor skills but once again a referral was ignored but was written down.

He was also wrong about certain things in his explanations. He told us that children with Aspergers cannot talk properly and will not look at you. That's not true! When we asked about DS bowel issues he told us it was just toddler diarreah and will develop into IBS which he then explained wrong also. A director of peadiatrics should know his stuff.

Now, i know DS may not have ASD at all or may not even be on the spectrum but i felt like we were not even given a proper assessment. From the moment he read our referal he was very unprofessional. He read it in 'voices' he put on...made fun of our GP etc. Told us all Dr's have obsessions like lining up sugar packets and it means our son will become a Dr too. The main points this Dr said for reasons our son absolutely cannot be on the spectrum were that he shows some eye contact, he smiles, he is affectionate and he likes animals and shows empathy. A child on the spectrum will NEVER do those things. I don't believe that. He did not listen that the eye contact is limited, the affection is mostly on his terms and the empathy is only in certain instances..if you are crying he can see you are upset but he does not really recognise any other form of sadness, pain etc and just laughs most times when someone is hurt. This may not mean anything but it was ignored because his son does not show any of those.

To me, OCD cannot explain all my sons behaviours and delays. He is not bothered by these rituals and obssessions etc like someone suffering OCD would be. We have since gone back to our GP and gotten another referral for a different Pead aswell as Speech and OT. I am just so frustrated we have to wait again...it took over a year to get that appt! Our new appt is in Nov so nowhere near as long thankfully but it is still time wasted that we could be accessing assistance for our son. He will be 4 in Nov and i was really hoping to have this sorted before he started school.
I'll list a few main things off the top of my head and then my questions

*Severe Speech Delay with improvement now.
*Loss of language skills and knowledge (shapes, colours etc) that is now being regained
*Licks everything..people, the ground, the walls, his toys etc.
*Head bangs (not as regularly as the other things) and picks his skin
*Wipes his hands through his hair as soon as he touchs something
*Has had genital injuries from an obssessive 'rolling' behaviour
*Lashes out for no reason
*Violent tantrums over the tiniest things that last longer than normal and he cannot be consoled
*Does not handle day to day change but handled new sister, new house etc
*Things have to be a certain way
*Very sensitive to slight injuries and carries on about them long after the bruise/scrape is gone
*Very limited interests in many things and they are all he likes (toys, shows etc)
*Incredible memory..almost unbelievable
*Sloppy peanut butter consistency of BM...very acidic that eats his skin till he bleeds. Dr said take him off dairy...made no improvement whatsoever.
*Only has just become TT for number 1's but was a struggle...and he is completely dry every night also from the get go. Still will not go for #2 unless in a nappy...complete meltdown.
*Fine and Gross motor skill delays..just a few-
-Can't pedal a bike
-Can't climb a climbing frame etc
-Can't use scissors
-Can't draw a line, circle or hold a pencil properly
15 month old sister that still can't walk does things better than him..Dr said 'maybe she is just smarter than him' He walked at 10 months and was advanced with all his skills up until it all went downhill.
* A few of the Food issues
-Will not eat anything other than a few select foods (peanut butter sandwiches, pasta, chicken nuggets and noodles are the main things)
-Will not eat fruit unless it is puree
-Gags till he vomits if something he doesn't eat is put near him and gets extremely upset
- Very sensitive to change in food...once picked mince out of a pasta sauce i hid to try to get some meat into him.
Some of his Sensory type issues-
- Cannot handle loud noise...always wanting volume of tv and radio turned down. Loves mowers and vaccume cleaners but runs a mile screaming if they might get turned on.
- Will not play with play doh, finger paint, mud, etc
- Will not wear socks or thongs and will only wear clothes if he has to. Will run around naked in 0 degree weather! Hates tags etc.
- Have to hold him down to brush his teeth, wipe his face etc.
- Does not like being kissed or light touching, wipes his skin imediately

That's just a few things i can think of right now...SO my questions are

A) Does your child on the spectrum have eye contact, smile, show affection, like animals or show empathy?
B- Are any of those behaviours i listed consistent with being on the spectrum rather than OCD and does your child display any of them?
C) Could my son just possibly be OCD and i am overreacting?

ANY help is greatly appreciated. I am just trying to gather as much info as possible. Every little bit will help and possibly ease my mind too...TIA xx

Hi all,
I am after some opinions from parents of kids on the spectrum. This will be long as i try to explain so please bare with me...
We have recently finally seen a peadiatrician and were given a 'diagnosis' of OCD with Speech Delay. Not to bother with any form of treatment...just to ignore it basically. This came after an absolutely shocking appt where he did not interact with our DS at all aside from saying hello and then glancing at him a few times (where DS did not respond and promptly covered his face) The whole appt this Dr did not listen to what we had to say, ignored what we felt were key points, wrote things down wrong and was more interested in telling us about his 80 year old uncle with Aspergers and comparing our son to his Autistic son who by the sounds of it has very severe classic autism.
For example..we told him about our DS having good language development then from the age of around 20 months lost it all (as well as knowledge) to the point where he did not even say mum anymore...he did not speak many words at all until over the age of 3 and now is improving but is still delayed. Once we spoke of this the Dr proceeded to tell us his son didn't speak till 6 so why worry. We had a speech assessment done 6 months ago and it showed on the line he was almost in the most severe catagory..of course that has changed now he is talking more. I asked for a referral to Speech the Dr however told us not to bother with Speech Therapy because his son only learnt 1 word in 3 years...it's a waste of time and i was not given one. As with OT...DS has many delays in both fine and gross motor skills but once again a referral was ignored but was written down.

He was also wrong about certain things in his explanations. He told us that children with Aspergers cannot talk properly and will not look at you. That's not true! When we asked about DS bowel issues he told us it was just toddler diarreah and will develop into IBS which he then explained wrong also. A director of peadiatrics should know his stuff.

Now, i know DS may not have ASD at all or may not even be on the spectrum but i felt like we were not even given a proper assessment. From the moment he read our referal he was very unprofessional. He read it in 'voices' he put on...made fun of our GP etc. Told us all Dr's have obsessions like lining up sugar packets and it means our son will become a Dr too. The main points this Dr said for reasons our son absolutely cannot be on the spectrum were that he shows some eye contact, he smiles, he is affectionate and he likes animals and shows empathy. A child on the spectrum will NEVER do those things. I don't believe that. He did not listen that the eye contact is limited, the affection is mostly on his terms and the empathy is only in certain instances..if you are crying he can see you are upset but he does not really recognise any other form of sadness, pain etc and just laughs most times when someone is hurt. This may not mean anything but it was ignored because his son does not show any of those.

To me, OCD cannot explain all my sons behaviours and delays. He is not bothered by these rituals and obssessions etc like someone suffering OCD would be. We have since gone back to our GP and gotten another referral for a different Pead aswell as Speech and OT. I am just so frustrated we have to wait again...it took over a year to get that appt! Our new appt is in Nov so nowhere near as long thankfully but it is still time wasted that we could be accessing assistance for our son. He will be 4 in Nov and i was really hoping to have this sorted before he started school.
I'll list a few main things off the top of my head and then my questions

*Severe Speech Delay with improvement now.
*Loss of language skills and knowledge (shapes, colours etc) that is now being regained
*Licks everything..people, the ground, the walls, his toys etc.
*Head bangs (not as regularly as the other things) and picks his skin
*Wipes his hands through his hair as soon as he touchs something
*Has had genital injuries from an obssessive 'rolling' behaviour
*Lashes out for no reason
*Violent tantrums over the tiniest things that last longer than normal and he cannot be consoled
*Does not handle day to day change but handled new sister, new house etc
*Things have to be a certain way
*Very sensitive to slight injuries and carries on about them long after the bruise/scrape is gone
*Very limited interests in many things and they are all he likes (toys, shows etc)
*Incredible memory..almost unbelievable
*Sloppy peanut butter consistency of BM...very acidic that eats his skin till he bleeds. Dr said take him off dairy...made no improvement whatsoever.
*Only has just become TT for number 1's but was a struggle...and he is completely dry every night also from the get go. Still will not go for #2 unless in a nappy...complete meltdown.
*Fine and Gross motor skill delays..just a few-
-Can't pedal a bike
-Can't climb a climbing frame etc
-Can't use scissors
-Can't draw a line, circle or hold a pencil properly
15 month old sister that still can't walk does things better than him..Dr said 'maybe she is just smarter than him' He walked at 10 months and was advanced with all his skills up until it all went downhill.
* A few of the Food issues
-Will not eat anything other than a few select foods (peanut butter sandwiches, pasta, chicken nuggets and noodles are the main things)
-Will not eat fruit unless it is puree
-Gags till he vomits if something he doesn't eat is put near him and gets extremely upset
- Very sensitive to change in food...once picked mince out of a pasta sauce i hid to try to get some meat into him.
Some of his Sensory type issues-
- Cannot handle loud noise...always wanting volume of tv and radio turned down. Loves mowers and vaccume cleaners but runs a mile screaming if they might get turned on.
- Will not play with play doh, finger paint, mud, etc
- Will not wear socks or thongs and will only wear clothes if he has to. Will run around naked in 0 degree weather! Hates tags etc.
- Have to hold him down to brush his teeth, wipe his face etc.
- Does not like being kissed or light touching, wipes his skin imediately

That's just a few things i can think of right now...SO my questions are

A) Does your child on the spectrum have eye contact, smile, show affection, like animals or show empathy?
B- Are any of those behaviours i listed consistent with being on the spectrum rather than OCD and does your child display any of them?
C) Could my son just possibly be OCD and i am overreacting?

ANY help is greatly appreciated. I am just trying to gather as much info as possible. Every little bit will help and possibly ease my mind too...TIA xx

Hun, I dont have any advice for you....sounds like you have a long road ahead. All I wanted to say is that I am so frikin sick of hearing about dr's like him. I have a friend with a child who needs alot of help....she rings me in tears because the docs are so unhelpful and giving ridiculas advice. Dont get me wrong, I have dealt with plenty of wonderful doc too, but it really is irking me lately hearing stories like this. As a parent, if you go to a doc, you want the best advice pos. I once took my older daughter to a pead and he took personal phone calls on his mobile through the apoint and then charged me $170. I was soooo angry. Anyway...good luck with everyth

I myself have a few of those issues (not so much now, but as a child), so I am very aware that my DD could be the same.
I definatley think there is something more than that Dr is saying and I would be demanding a second opinion from another Dr. It is within your rights to do this too.
Sorry I can't be of more help, but definatley know what you mean about Dr's not listening (I have a extreme prem DD) and think you should go elsewhere.
Good luck!! smile

Hi

I am so sorry to hear of your anguish. For one you need to see a new Paed. I would ask for one who specialises in learning and behaviour disorders. What state are you in? Also if you GP thinks he needs to be seen more urgently perhaps ask him to try and get him fasttracked in. Put your name down on a 'cancellation' list of the paed as this can get you in earlier too.

With what you describe I agree with your gut about ASD. You are right, kids on the spectrum will mostly avoid eye contact, but it doesn't mean they never ever give it.

I know when we needed to see a paed it was only a 3mth wait - and that at the time felt like an eternity. One thing we were advised to do before seeing the paed is to get assessments done first so you can arrive armed with these and there is no time wasted with having to run around and get further assessments done. If your DS is on the bottom rung of the speech development and has that many OT issues then this alone would ring 'alarm' bells so it sounds odd he has discounted all of this ??

Have you googled 'Sensory Processing Disorder' ... he sounds extremely sensory too with what you describe (remembering they can be either over or under stimulated in a variety of senses). In the meantime while you wait for assessment maybe take a look at the specialneedstoys.com.au website for sensory items that may help his coping a little better.

Hi there,
I feel so bad for you. This paed sounds like an idiot. My son who is 3 years has just been diagnosed with ASD. He has great eye contact, smiles, loves animals but isn't very affectionate, has OCD behaviours, sensory issues & severe language delay.

You'll never see two children with Autism displaying identical symptoms. That's why it is call autism SPECTRUM because there are the very high-functioning types at one end that have very few symptoms & lead a pretty normal life - then you've got the severely affected ones at the other end that are basically completely shut off - and every stage in between.

I'd definitely seek a second or third opinion, whatever it takes. There seems to be much more going on with him than OCD. There are many red flags here, in particular -
self harm,
violent tantrums,
cannot cope with change,
obsessive behaviour,
bowel/intestinal issues, (TT omg! sounds like my son),
sensory processing issues like hating the feel of clothes & noises (exactly like my son!he runs around closing all the doors and windows when someone starts a mower a block away & runs around with hands over his ears),
being extremely particular with foods...

WOW! I'm certainly not a Dr, but he has MANY of the symptoms that my son has. I don't want to be negative, but you really need to seek out another specialist ASAP. The sooner he can get a diagnosis (if he truly has ASD) and the sooner he can get specialist treatment the better. Plus YOU need help too. Its extremely hard caring for a child with these issues, especially if you are like me and don't have much family support/help. And also find a support group so you can talk to people in the same boat as you. I know from my experience its so hard when all your friends have normal behaving children and they think mine is just a brat or the result of bad parenting.

Just remember ITS NOT YOUR FAULT. Whatever the outcome, don't blame yourself.

Hugs xxx

Firstly, Im really sorry that you had to go through all the hastles of waiting for a pead only to find out he is a complete tosser, I cant imagine how frustrated that must have left you.

Now Im no expert on the spectrum but a very good friend of mine has a child with autism. From what I understand a child must possess 6/12? of the types of symptoms to be classified as autistic (or this is my understanding anyway). There are soooooo many different variations and my friends son has a bit of all the symptoms and hence has been diagnosed with autism. Like your little guy, my friends child was fine, always advanced or on schedule until at about 2 years old the lights "switched off" as his mum describes it. It took from then until recently (he is now 11) for a diagnosis which is really unnaceptable.

All I can say is; persevere. You know your child best and dont stop until you have the answers you need. Hopefully the new pead is much better than the last dropkick.

Hello to all above, I am a mother of 3 children, two of whom have an A.S.D. My oldest son just turned 5 and has Classic Autism and a mild delay. He had the regressive kind of autism where at around 18 months he lost the few words he had and started displaying self harm behaviour, head-banging, screaming due to lack of communication and positive dietary/food intolerances, and was a very "sensory" child. They say that all children on the Spectrum have some degree of Sensory Processing Disorder. This can mean 1 or more of the 5 senses are affected in some way - either over sensitive or undersensitive. Often young children will try and squeeze between the lounge or run into you (often with their head) and this is for a reason - to receive proprioceptive input which helps them to regulate their nervous system. My youngest who just turned 3 has Atypical Autsim (means he doesn't meet all the criteria for Autism. Also called PDDNOS or Pervasive Developmental Disorder, Not Otherwise Specified). He is overactive and uncooperative. He also has a Mild Developmental delay and as of 2 weeks ago may have mild ADD. Basically, if you didn't know he had a diagnosis you would think he was a very naughty little boy. What people dont know about my boys is that my eldest has ALWAYS been incredibly social with quite good eye contact, a funny little personality and a genuine care towards others. My youngest is very social also and just a beautiful little personality albeit that he has to have control over things and has big issues with noise and stims on water. Oh, and he is a runner! Two years ago I started a Facebook support group for parents/Carers like me called:- Central Coast A.S.D. Support Group. I would welcome any of you to join and then look across to the right side of the page where the "Docs/Documents" are located. You will find one for New members and many others. One is about signs/symptoms although having read through your list, and having met many children and parents/carers over the past 3 years of doing all kinds of Early Intervention (including biomedical and diet) I would certainly say that there is a strong probability your child is on the Spectrum. I would encourage you to seek the advice of a Developmental Paediatrician. If you would like to chat further to me please dont hesitate to send me a personal message on Facebook as I am now one of the contacts that the Autism Advisor board give out to parents with a child newly diagnosed. The MOST important thing to remember is that your much loved son/daughter is still the same child they were the day before they may be diagnosed. Please don't look at your child the way they are now and think they will always be this way. My eldest son especially has come so far in the past 3 years. He has already exceeded any expectations I had for him after his diagnosis and considering how low functioning he was. He now attends a FABULOUS Preschool Kindergarten 3 days a week, goes to Early Intervention two days for 2.5 hours each day, attends Speech therapy and O.T.
Out of all of these I would say the most important to start on in the beginning for most children is O.T. or Occupational Therapy. You will also learn that it is very important to seek out professionals who SPECIALISE in dealing with children on the Autism Spectrum. I hope this has been of some help to you and again, I am happy to answer any queries you may have in the hope that I can support you and make your journey a little easier. There is a lot to learn/know and it really helps to be part of an Autism family such as our Facebook group. Take Care!
smile

My son is on the spectrum he was diagnosed when he was 22 months. He was head banging, rubbing his head across the floor, poor eye contact, didn't like you looking at him or being cuddled. He is now 8.5 he can write, read, still pretty much non-verbal but can say the odd word/sound, eye contact is a lot better, loves being cuddled and has never been an aggressive child and is quite social.

Food can play part on their behaviour my son went gluten free when he was around 2.5 and his behaviour got better although we did give him the odd gluten if we were having something. He is now back on gluten and is doing okay he does have tantrums but it is when we have taken something off him like his computer.