What do I need to know - quirks, sensory sensitivities and our paed appt.

Hi everyone.
I've mentioned a couple of times on here about my DS who is 5 in July having a big bunch of quirks and sensory issues. My main concern over the last 3 years has been his eating - make that severely limited diet.
I worry about his diet and his growth and it's long term implications which is why I've fought for 3 years to be heard.
I've now been given a referral for a paed and I know that everyone is looking at a possible spectrum diagnosis (which I'm totally fine with! ;) ), but I was wondering what information people who have been in my situation might have for me.
I've had my GP mention possible funding and support groups and obviously won't know if he is eligible until after his paed appointment.
What happens if he's not eligible? What is he eligible for if he doesn't meet all of the requirements for an spectrum diagnosis? (I've had someone mentioned something about 6 out of 12?).

How much 'therapy' are we looking at (assuming he is only mildly on the spectrum which is where I and a child psych believe he is)?

What therapies would be involved?

Does the funding cover all of your costs or are you still a fair bit out of pocket?

I'm not going to pretend I know a lot about Autism etc, I don't. There aren't any other kids at his Kinder (that I'm aware of) that are on the spectrum officially, and I don't know anyone locally or IRL that has an Autistic child. I also live very rurally, in farming country about 80 kms drive from the nearest regional city in VIC. I have no idea how much our living situation will affect our journey at all.

That being said, if he's not classed as being on the Spectrum, I'm also totally cool with that. I'm looking at going to an OT before we see the paed (we have a paed appt in August, although I'm going to try and get a referral elsewhere) to try and start with this food aversion/sensitivity issue.

I feel like I'm nowhere at the minute. I feel like I've had confirmation from my GP and various other specialists who I have spoken to over the phone, that my DS is not quite what most people would describe as 'normal', but I don't have any real answers either and whilst I'm not worried about him in the short term, I am worried about the long term. I want his food issues sorted asap as they are my biggest concern, but I'd also like some strategies to help DS and us as a family cope with things like his outbursts, and his sensory sensitivities.

If anyone has any advice at all, I would really appreciate it. :)

Thanks in advance!

Just wanted to bump this. I know there are lots of lovely people around who will have little snippets of advice for me:) Thank you to those who have PM'd. :)

When you say a severely limited diet, what do you mean? My DD2 has a shocking diet. She will eat sausages, frozen peas that aren't heated, toast, plain sandwiches with ham or peanut butter but nothing else, plain pasta, cheese but only if its grated and drinks milk. She eats absolutely no vegetables except for the peas - can't even get her to eat things like McDonalds fries. As far as fruit goes she will sometimes eat bananas, loves watermelon, red grapes and very occasionally will eat a pear. That is literally it. When I have one of those days that I push her she will either have a melt down, or will try and eat it but vomits it straight back up. We have been seeing a specialist paed with her for nearly 18 months now and he is aware of her diet and says while its not ideal in terms of what the rest of the family wants/likes, its not something to be concerned about. She has no variety in her diet, but is able to meet her daily nutritional requirements.

She has several indicators but not enough to officially be classed as being on the spectrum. Like you I fought for a very long time to be heard - mostly I was told she would "just grow out of it". We still don't have a definitive diagnosis, and because she isn't on the spectrum no funding is available to us so I can't give you any advice in that regard.

Good luck. I hope you get some answers or a way forward at least.

I'm not sure if I can help you, but my DS who is 2, has very limited foods that he will eat too, to the point of me worrying about it and I suspect he is low in iron as a result of this. We have just been to see a developmental paed who has confirmed he is delayed in most areas, such as speech (he has 3 real words, rest id jargon) and role playing/imaginative playing. I suspect he has sensory issues, but so far the doctor has not indicated he is on the spectrum, although he has some more testing to do on him at the hospital to see where he needs help the most. The developmental paed we went and saw specialises in ASD and we had to wait 5 months to see him. I don't know if I helped you at all, but I just wanted to say that I was glad I took him to this doctor because I felt like time was passing me by and I needed to know if my DS needed help from anyone. GL with your DS hun xox

DS's food list:

Chicken nuggets (can be fussy to specific types)
Yoghurt (only plain vanilla - no fruit or lumps)
Chips/Fries/potato gem type things (Again specific types. Won't touch roast potato/mashed potato/wedges etc)
Cheese (only highly processed home brand cheese slices. He refuses any other type and screams in terror at shredded cheese)
Hommus (can be fussy with certain brands)
Multigrain bread
Strawberry jam (only on toast, extremely small amounts and very rarely - no butter or marg)
Milk
Juice
Frozen fruit puree "icy poles"
Fish fingers (VERY rarely)
Sausage rolls (VERY rarely - not in the last 12 months)
Museli bars (strawberry flavoured, yoghurt covered ONLY - homebrand from woolies only)
Junk (lollies, cakes, icecream,donuts)

No fruits. No vegies, No pasta, No Rice, No sauces.

DS is unable to meet his daily nutritional requirements with his current diet and I've tried EVERYTHING there is to try (purees, hiding in other foods, force feeding, only offering the foods he doesn't like. Nothing works and he will go days without eating to avoid having anything he doesn't like. He cannot stand the texture of most foods which is his issue, rather than the taste itself, and he refuses to touch things with his hands, freaks out when made to hold something like watermelon and has a huge meltdown - This is MUCH more than fussy eating ;) )

Geez. I thought I had it hard! I think its texture a lot for DD too.

Hopefully your appt tomorrow will shed some light. Its so frustrating when you know that something's not right and you can't get any help to find a way to deal with it

I agree it sounds more than fussy eating. If your on a wait list then ask to go on a cancelation list as it might get you in sooner. Also maybe try seeing a psychologist who can give you some direction as to behavioral therapy.

For funding, if he receives a diagnosis of an asd you should be eligible for fahcsia funding of $12000. It doesn't go far but will give you a jump start in getting therapy up and going. If you can learn the therapy yourself this will save costs and benefit your ds a lot. If you can get to Melbourne, try the people I suggested. They may be able to assess him and write a program for you and help with all the concerns you mentioned.

When you go for the assessment/diagnosis take his baby book, it's really helpful to jog your memory as you will be asked a million questions about his early development and milestones.

On my phone and typing what ever I can think of so hope that all made sense!

Ok so I've called the one other pediatrician, and we can get in earlier..... mid JULY! I can't get in any earlier than that apparently (and yes, these are private pediatricians).

Is there something else I can do in the mean time? Someone else I can see that could help move things along a little quicker when I do finally see the pediatrician?

I REALLY would love some replies. I'm feeling rather lost at the moment and am concerned that if I don't act fast, my son will suffer.

Hun I'll PM you.

I'll try and be on FB tonight after kids in bed - prob by 8, 8.30. Might be easier to chat than long-winded reply here.

I'm on the spectrum, as is DH, we suspect DS is as well.

Personally, as we're fairly mild, it isn't worth getting a diagnosis. We could have one each if we so chose, we choose not. It makes life harder for mild cases, not easier. And therapy to stop being me? I'm really that objectionable? Sure there are tricks I have had to learn to cope with everyday life, but a loving parent could have taught me them easily and with kindness.

As for the food - the body craves what it needs if it isn't provided. Trust me. In my life I have lived off the same very bland meals for a month and still been healthy. I then fancied a bit of a change. Have less of an issue with it now, but that's another story. Hummous, jam, fruit icy poles and fresh fruit juice DO contribute to the 5-a-day for fruit and veg. Your son's diet may be dull (for you) but it isn't the end of the world.

Thank you for your replies. :)

His diet is not something I'm willing to let go. It's not nutritious enough and he is not growing properly because of it. If he was, I wouldn't be concerned. If he ate one type of fruit or one type of veggie, I wouldn't be concerned. I AM concerned and I am not willing to let this go by (considering I was a child who was rather fussy although not anything to his extent and I feel it has impacted on my life in a negative way).
His diet is my main concern. I don't particularly care too much about the other stuff (although it is always going to be a little concerning), but it impacts my entire family and our day to day lives.

I'm not prepared to ignore the instinct I have had for over 3 years now that there is something amiss. If there is a way that I can help my son, I will. I want the absolute best for him. I don't want to regret just letting it be. I don't think there is an issue with me taking it a little further and trying to help him.

I'm not looking for therapy to stop my son being who he is, Why would I?. I LOVE my son for who he is. I want the best for him. I want him to be the best version of himself he can be. I don't want to CHANGE him, I want to HELP him. All I want are coping strategies to help him as an individual and us a family deal with his outbursts and this dietry thing.

Whilst I appreciate everyone's advice (no I'm not kidding I REALLY do!!), I do have to disagree that it is something to be left alone. I guess it's hard for people to understand what it's like as they haven't been in my situation, as I haven't theirs. I'm just looking for some ideas. I feel I'm a pretty open minded person and you know what, I'll be absolutely STOKED if I'm told by a few professionals that it's nothing to be concerned about and to just let it go and get on with life. What better outcome could there be?

But while I can, I will do everything in my power to find out where we should be going. This is not something I've decided is an issue all on my own. This is something that several more professional people that I have come across who have had dealings with DS have also raised concern about.

I do thank you for your reply TFB as it's helped me think a little differently and probably will continue to as I think about what you've posted more.

Thank you everyone.

I TOTALLY get where you're at. Healing your son is not changing him. Sensory issues, autism etc are not personality disorders- you will NEVER change his wonderful personality. but you can heal his illness.

We have our son on GAPS. I would strongly, strongly recommend you read the book. Changing his diet was the hardest thing I have ever done. We did it through allowing him to starve himself (there is this food, or nothing) and then force feeding him. It was ghastly and went against everything I ever wanted to do as a parent. But my son was very, very sick. While their candida is so out of control it is controlling the body and all food cravings. these are NOT natural and allowing natural cravings to dictate in such as unwell person isn't a suitable approach.

I was frustrated like you that everyone applies "healthy child" rules on your unwell child and you know it's not working. My son is SO much healthier now and it makes my heart sing to see him run around and not have bags under his eyes and have nice healthy, strong looking limbs. You can help your son! Feel free to ask any questions :D

Sorry, Niadalla, I don't want you to think I was intending to have a go at you. But I do know that my mother freaked out about my diet and weirdness so much when I lived with her (really her "life skills assistance" was telling me not to be me - to be fair, this would have helped me in my teenage "you have to be dull and fit in else you are outcast forevermore" years if I had obeyed) and now I'm pleased she didn't get professionals involved, as it would have made my adult life a lot harder.

Would vitamin supplements help at all for the diet?

I can understand where TFB is coming from, but as someone who works with children, adolescents and adults on the spectrum I truly believe a diagnosis can be empowering. Your ds will be able to get the support he needs to navigate a world that is confusing to him. For adults that are very mildly on the spectrum I don't worry about formalizing the diagnostic, simply work on the strengths ad weaknesses being on the spectrum brings them and help the further those strengths and navigate any difficulties they may be having (just as you would with anyone not on the spectrum). For young children, early intervention is important and will assist in developing vital social skills to navigate friendships, develop communication skills (even with verbal children on the spectrum abstract language can provide much confusion) and build their strengths. Therapy won't take away who he is.
As for the diet, his avoidance of textures is a very real dislike for him, but I have seen kidsfind it easier with age and exposure. As I'm sure you have experienced there is no point in force feeding, it's stressfull for all and only builds the dislike for the food. Part of being on the spectrum is a dislike for change. This can result in not liking to try new things. Try playing with food without the need to try it (painting with veg as stamps, making a fruit face,etc). This may start to desensitize him to the idea. To be honest there is more you can do but working with a behavioral psychologist who can meet with your son and even better in your home would be best as me throwing ideas out on here is a little hard having no idea what your ds is like.
Hang in there, the will be many ups and downs in your parenting journey but it will all be very worth it.

I have to disagree with that there is no point force feeding. I know it sounds awful and it's not for every child but it DID work for us and I honestly feel we had exhausted the other options and my son's health was slipping away. I wont go into the details here but I do like to put it out there as an option to explore. Truly resistant eaters are very misunderstood, it is like infant anorexia and it's very, very hard to deal with.

Meow it sounds like your son was very much medically at risk. There is a link between anorexia and ASD. With an eating disorder though, force feeding is a last option and used when the person is medically at risk (as it sounds your son was). I'm not sure how you force fed and I truly do not hold any judgement, I have seen many families at this point and grew up with a brother who had a VERY restricted diet and my mum tried force feeding (it didn't work). The way I would go about it (and many may consider this force feed but I personally don't) is gradual exposure. Therefore choosing one food, then choosing a reward (eg a fav food he only gets in relation to 'trying new food', a special toy, etc). First the goal would be (if his reaction is to even not go near new foods or accept them on his plate) is have the new food on his plate, then touch, then smell, then touch his lip, lick and so on. I would keep a chart and he can put a picture or photo of the new food up when he has actually tried it and get a really big reward.
Overall, any feeding program should be under the guidance of a doctor to ensure the child is medically healthy. I have seen children go a very long time without food and drink just to avoid eating a new food and so medical guidance is important. Children with ASD are likely to go a lot further than another child and defy the 'they will eat when they are hungry' rule. With that said, I have recommended that approach before when a child was only accepting a few foods.
I guess what I'm trying to say (and I don't think it is coming across very well so I do apologise) is that every child will be different and it is not always easy to make the right choice. Meow, for your son it sounds like the idea of a new food was the problem (I may be wrong, what do you think?) and in this case I can see where forced feeding could work, however; if it is a texture issue I'm not sure it would (Tony Attwood has some info on this).

*I'm wondering if we have different ideas of what forced feeding is. I am not thinking don't offer any other food than what the rest of the family is having (I have used this approach before). Force feeding to me would be sitting on child and making them eat/try new food or a nasal gastric tube. Anyway just wanted to check, I am thinking we actually may be on the same page?

I'm not sure what else I can really add... but here goes...

DS1 (5) has ASD (Autism) SPD (Sensory Processing Disorder) Developmental delays a severe speech disorder and a LOT of issues with eating (sensory mainly, but he also plainly refuses to eat at times). We pushed for a diagnosis because we were struggling to cope. Getting a diagnosis has been the best thing for him, we have received a lot of help as a family and he has received a lot of help as an individual. Therapy wise he does regular speech and OT plus 4 hours a week one-on-one with a therapy assistant (she works through the therapy goals with him). He does see the physio occasionally and a dietician helps to keep an eye on his diet. We have a meeting every school term with a child psychologist and all his therapists, teachers, EAs etc to make sure everyone is on the same page as far as his schooling and development goes.

Have you tried letting him eat off your plate? Sometimes our food looks better ;) There's also a book, I was made aware of this morning, Deceptively Delicious. All about hiding vegies in foods, like broccoli in chocolate!

DS2 also has a diagnosis of SPD, however it's not something we pushed for, it was more accidental. DS2 comes to DS1's OT appointments and it was there that DS2 was referred to the OT for his own issues (he's an avoider, just shuts down when things get overwhelming for him). Having the diagnosis has made no difference, but he is not in school yet (3 in June) so we are doing OT and probably speech (again) for the time being to hopefully prepare him better for Kindy in 2014.

If you aren't already then I suggest seeing an OT, or in the very list jumping on the waiting list. An OT will be able to help with the sensory things.

Hope that helps!

Thank you everyone!!

EK thanks for your post. Yes, I have tried since he was 14 months old to share what I eat with him. If he hasn't eaten what he was served he is always offered what other people have. It's never worked. I've certainly tried everything there is.

I've actually spoken with a MCHN who is going to do the brigance test with him and I'll also be getting the names of local OT's etc who are actually local. It's SUPER hard to find anyone where I live (well, there are actually no medically trained professionals where I live, I travel the 70-80km drive into the nearest large regional city to see anyone.... and even then they only have 2 pediatricians.).

Just don't want to sit on my hands when I could be doing something. DS and I are always doing something - reading eggs on the computer, or getting out some workbooks, or getting outside with DD and being messy, playing with the dog, going for walks and riding bikes etc. I feel like I do all I possibly can and it still doesn't really help IYKWIM. We've taken him on picnics, I've been getting him to help me cook. We're growing our own vegetable garden, we have fruit trees. We have sheep in the paddocks. He knows where most of his food comes from. I have his kinder teacher helping him at kinder and they've been learning about 'good' and 'not so good' foods at kinder. They've had tasting sessions where he's held some fruits/veggies in his hands, but refuses to touch the 'slimier' types. I continually offer him what he needs to be eating, but no luck yet. I won't give up and I'l keep trying.

These posts have been great! Thanks every much everyone, I really appreciate it. :)

Yeah, I don't think all the 'usual' stuff with these kids. We did all the same things with growing, cooking, offering, etc etc etc.

FWIW a medically trained professional wont be able to help you much usually as they don't have training in nutrition. If you can find a naturopath or dietician who is versed in GAPS they will be able to explain what is going on for you. There are many who do phone/skype consults.