Another suspected Autism post.. Please reply

[Midnight_Fairy]

^ my son was under constant referral since he was 2 lol and it still took ages as he was always growing up and changing so they observed this x

 

[mummy2o]

I think with my son he didn't like the word no so this made it very easy. He has classic autism and 5 but has about a 2 and half year old capacity. He is thriving in mainstream school and making lots of friends who accept him and he's finally accepted them. So all is good. Once you get your diagnosis I would highly recommend going on a course. I've been on the early bird course and its be brilliant with lots of tips. We have a timer to count down the change of activity so he knows he how long he has to do 'work' for. Only 10 mins as his attention span hardly holds that as it is! Just try and reinforce the good behavior and work out why he is causing the bad behavior. Is it because of something he doesn't like? Does it only happen at certain times? Try and see the world through his world and then maybe you can tackle his issues to make it easier for the both of you.

 

[xxLeighxx]

Definitely.. Communication seems to be the hardest thing atm.. he says a word, I have no clue what he's on about, but he thinks I do, so when I sayy I don't understand that is it.. tantrum. It's hard because I have a 6 month old too and although I spend as much time as poss with her it seems like Kyle is getting all of the attention and when I go back to her it's time for her nap.. I feel so bad.. On both of them. if I'm honest I feel like a useless Mum, even though I have their best intentions at heart I can't seem do to right for doing wrong

Oh babe, don't feel like that I know what you mean because I regularly think I fail my DD but everyone says I'm a fantastic mum and that they wouldn't be able to handle her! Its very hard, can be very lonely and a very stressful time, just remember it won't be forever, he's still very young! Have you tried establishing a strict routine so he knows what will always be happening and maybe using photo cards! At my DD school they use them, they have photos of painting, sandpit, jigsaws etc and let her pick so its easier to communicate, also in her new school they have there daily routine in pics, I.e. Registration, singing, playtime etc so the children know what's happening next! You could try brushing teeth, getting dressed, breakfast pics etc! And does he have a punishment e.g naughty spot?? Xxx

He's had a strict routine since being a baba - He always knows whats coming next and I tell him too, for example.. your going for a nap in 10mins etc. Although the cards might be a good idea! Same here hun, my mum often tells me how proud she is of the way I'm bringing them up, but it's hard to accept that when your getting things thrown at you! - Yeah I've tried to enforce the naughty step but it doesn't work, as soon as he's off it, he does whatever he did to get on it, again and again. Shouting doesn't work, and I don't want to do that anyway, I don't want him to be scared to say something for fear of my reaction. His room is his happy place so I don't want to make that a place of punishment cos I don't think their bedroom is good for that. I did however, get him a tent and put it in his room with loads of cushions and "comfort" toys.. This usually calms him down now, but for how long!? lol. Has your DD been diagnosed or are you still in the process ?

Oh Dragonfly, I'm sorry to hear your having such a hard time being heard! - Keep pushing, sometimes health visitors over look things (easy to do though) that they really shouldn't. I mean I remember asking my HV why my son (at 12mnths) was banging his head on his cot/wall constantly.. She asked me if I was going into him.. Uh, yes he's gonna damage himself! She said, oh that's why then, just stop going in. Uh what!?. Just push push push hun, your the mum and you spend the most time with your baba and should listen to you! I hope you start getting somewhere soon!

Does anyone know how long this process takes ? Roughly.

No my DD doesn't have a diagnosis yet, she's currently seeing a genetics clinician now, a new set of eyes to maybe diagnose her! She does have her statement which I'm glad about now though! I agree, I don't think bedrooms the right punishment! Atm we're trying to ignore, diffuse, or distract from any bad behaviour and don't say anything about it and instead to just go 'shall we go and play with this' or 'do you want to help mummy' its actually helping! Once I raise my voice with dd she instantly gets worse! If I speak nicely and distract her then it seems to avoid a big kick off, and we're praising her loads when she does something good! Its just so hard when you're at the end of your tether, sometimes I have to leave the room so I don't snap, the saddest thing about it is she seems to know she's hurting me and doesn't care at all! Xx

 

[Midnight_Fairy]

I did the early bird course too and the NAS run alot of courses such as Help! I am being challenged!

 

[Midnight_Fairy]

^ have you tried a private OT? My son got on really well and we found some ways to calm him down! x

 

[Menelly]

So my son will be 3 in November. I'll be totally honest, I've always thought my son was different, but he was my first born & I figured he was just like his Daddy. However, 3 months ago, my husband was diagnosed with high functioning Autism, so this got me thinking.

When Kyle was younger he used to bang his head off his cot a lot, I'd go in, make sure he was ok & within 10mins he'd be doing it again.. He'd do it most of the night. When he got moved into a big bed, he sat in the corner of the room and bashed his head off the wall instead. Luckily, he has stopped this.

Kyle won't play with other kids, he seems to be in his own wee world most of the time. He still wears a bib now, he slavers something terrible! He never looks at people in the face unless specifically (literally) asked to, for example if I want him to look at me I HAVE to say "Kyle, look at mummy". He goes mental at hand dryers, hoovers, anything that makes a lot of noise. He was slow to walk, 17 months, slow to talk, we got about 4 words out of him until he was about 23 months, even now, I think his speech is behind, no full sentences, it's "juice" for a drink not like my friends kid who says "drink please mummy" or "can i have a drink". He sits for ages engrossed in lining things up, usually blocks or cars and if I touch one he will say "oh no", put it back and if I do it again he will throw all the cars/blocks away and throw himself on the floor. He doesn't seem to like playing with anyone, sure my husband can throw him about etc and he loves it, but you can't play with him with his toys because you don't play the way HE wants you to play. He refuses to eat "messy" food (I say refuse, he doesn't communicate that with me, he just doesn't eat it) and gets very upset if he has dirty hands yet hates me cleaning his face with a baby wipe or whatever.

For a while I thought he was extremely ignorant and scolded him for not listening to me/family, I think now that that's just another sign of him having Autism, you can repeat his name up to 10 times and he will still not look at you, or even acknowledge that you're talking to him, I have to literally go up to him and as said earlier say Kyle look at mummy, he will then look at me & I can then tell him what I want to say.

I want to know what others think.. Sure I'm his mum, I know him best but I don't know much about Autism so I would like your opinion. I have my Health Visitor coming out on Monday afternoon to assess him but that's 6 days away and I can think of nothing else. Please reply, any thoughts are much appreciated. Also, sorry this is a book!

OK... to start? Please please stop forcing him to look at you. I know that's how you guys think to know someone's paying attention... but it hurts. It literally hurts. And it makes all attempts at auditory processing shut down. I can look at you or I can listen to you and process what you're saying, but (as "high functioning" as I am) I cannot do both no matter how hard I try.

Try "Kyle, if you're listening to me, please <flick your fingers, nod your head, stomp your feet, something that he knows how to do that isn't sensory invasive and doesn't involve eye contact.>"

Ok, now that that's done... he sounds very autistic.

One page I'd suggest, if you're on Facebook is Kayla's ASD page. She has some FANTASTIC slides that explain melt downs, lining things up, refusal of eye contact, food issues, etc. from the autistic perspective. And that can really help you learn what you might need to minimize and compromize for Kyle to feel comfortable.

 

[Menelly]

Thanks !!

It's good to know I'm not alone, he is going through a bad phase atm, he's whingy all day everyday at the min, I have to leave the room a few times a day to calm myself down, the stress is overwhelming sometimes.

Just a waiting game now I guess but I know it isn't a quick process, which is good, I don't want him "labelled" if he doesn't have it but it's positively doing my head in, I need to know but as long as he's some support in the mean time I don't mind!

It's not just children that are hard work with Autism, my husband has it too! - He's like a child because of it lol. But I love my family to bits, Autism or no Autism I wouldn't change a thing.

I'm quite a bit like a child being Aspie too. And... my ability to cope has gotten significantly better once my husband and I started embracing that. So we made a daily chore chart of things that absolutely must get done every day. We put a note on the door that lists everything I need with me to leave the house. I have a piece of paper taped behind the stove saying "turn me off if I'm not in use!"

Stuff like that. Is it a bit juvenile? Yes. But does it help me function on a significantly more adult level? Absolutely. You might want to try and sit down with your husband and find out if there is anything you can do to make daily life easier and less overwhelming for him. Because daily life IS overwhelming, for all of us.

For your kiddo? Grab some kid sized earplugs and some sunglasses and start there. Sometimes just the removal of sensory input helps greatly. When I'm melting down (nothing sexier than a 32 year old woman having what appears to be a tantrum like a toddler) my husband will often take me into the bathroom, turn the lights off, shut the door, and hug me till I calm down. (The dark bathroom getting rid of a good deal of sensory input.) Have you tried that at all with Kyle? When he's getting wound up and frustrated and stressed? Find a place that's safe and quiet and his that he can go decompress?

When my son was not much older than Kyle, we got him a little tent that we kept open in his room. And when he was overstimulated, he could go into his tent. His tent was invitation only and his safe space. We would only bother him if it was an absolute emergency, and he could go in there and feel safe. It really helped him stop having so many tantrums.

Good luck! Feel free to PM if you need someone to talk to. I'm the middle of (at least) 3 generations of autistics, so I've got a pretty good grasp.

 

[Midnight_Fairy]

As an adult who knows I have aspergers I hate being made to give eye contact, its so uncomfortable and feels like burning, I can do it because I have to to fit into society but I hate it and so I would never make your child do it as it could be hurting. x

 

[ashley_gee89]

Wow. Now I feel so bad for making him do that! But thank you for making me aware, the last thing I want to do is make him uncomfortable & hurt.

Menelly, thank you so much for your response & very useful info! - I will definitely be looking that up on Facebook. I have given him a tent in his room with cushions and "comfort" toys although I can't say it's doing much in the way of his tantrums.. Although, just being aware that there is a problem has given me a lot more patience with him, and so in turn, there are less tantrums happening.

The timing thing is brilliant too, my husband told me about that about a week ago, so, for example, now, when he's on my phone, I will tell him "15 minutes only" and he's perfectly fine, when, after 15 minutes my timer goes off and I have him give me the phone, no tantrums. Whereas before, he'd have a massive tantrum, I'm guessing because he plays number/shape/colour/letter games, and there predictable ?

I am amazed at how smart he is too, he can count to 30, recite the entire alphabet giving words for each letter, do adding and subtraction (I've seen him sit and do 3+9!!), totally baffles me!

Thanks again for all your replies, I can't thank each of you enough!

 

[Midnight_Fairy]

oo sorry didnt mean to make you feel bad. There are times when I do encourage my son to look at me too! When we practice social skills like going in shops etc I explain if he gives eye contact then people will know he is talking to them (IFKWIM). But I let him know he does not have to do it all the time but sometimes its easier.

Your son sounds like a very intelligent lovely little boy xx

 

[oox_tasha_xoo]

He sounds ALOT like my son hun. I have had an ongoing battle with my health visitor trying to push for her to refer him since he was 2. Although my sons speech has got worse not better. His pronounciation has got worse and he isn't saying things that he used to. We have been sent to have his hearing tested, all came back fine. We have seen a peadatrician as an emergency case and have also seen a speech therapist who told us to come back in 6 months. Peadatrician wasn't happy about their decision and have pushed his appointment forward, so not sure what next step is now. It's such hard word dealing with the tantrums, head banging, and the constant lining of toys that has to be "perfect" or he will have a head fit! I hope it gets easier good luck to you , hope he gets seen soon and something sorted out for you x

 

[Menelly]

You can teach him the eyebrow trick if you can. In situations where eye contact is pretty much necessary (like job interviews as a good example) I look at the persons left ear or left eyebrow. It's close enough to the eyes to fool most people, and yet reduces the discomfort level greatly.

Check out the Karla ASD page on Facebook. She has some great reasons why social skills training should pretty much be the last thing you work on (if at all). But they're far easier to read in her slide format, and I don't want to break her copyright to post them here.

Link: https://www.facebook.com/pages/Karlas-ASD-Page/155369821204141

 

[Midnight_Fairy]

Yes^ I agree at age 4+5 not to worry about social skills. It depends on your child. I see a lot of children with ASD within my social network and work and they are ALL different. We as parents know what children are capable. Some people with asd are not fussed about friends etc. My son is very anxious about having friends and fitting in. We do practice social skills as personally I think its important if you think your child is capable.

He goes to mainstream school, life is mainstream and sad as it is but society wont change for him
We embrace the fact its good to be unique and different etc but he is very anxious about being able to make phonecalls and what to say etc as he wouldnt think naturally to ask how someone else his and a conversation to be one sided lol so we do practice and it makes him feel better.
If we go in shops I try and step back when possible and let him pay if he feels comfortable. Like I said, he is 8 now and this is what I think he is capable off. He has only been ready this year and he has been having lost of ELSA at school for the year which has helped this.
He now does not get angry at his brain working differently and feels like he can cope in situations he didnt like before. He knows he can stim, spin etc whenever he likes but sometimes its best just to walk away and do it rather than do it in class. He is begging to understand when he feels certain ways and I am proud of that

sorry OT but every child is different, never follow one book, one link, one website, read them all and adapt them to your child.

I went to see Temple Grandin in June and although I think she is amazing, not all of it applied to my son but to meet her was truely remarkable

 

[ashley_gee89]

I have no idea who Temple Grandin is LOL.

It's good your son is in mainstream school, I think that's probably best (depending on the situation obviously) as they already feel "different" so I would imagine going to school with other kids would help.

I'm finding it impossible today, it's 11am and already I have been punched in the eye (for some unknown reason) and had things thrown at me because I wouldn't gather his toys for him. I can't seem to differentiate between an Autism trait and a spoilt brat.. This is prob gonna sound SO bad but I'm at the point where I'm hoping there's something up with him because if not, then he's a spoilt brat and that won't have been my doing.. I don't give into him, we work on an earning basis.. However, his great gran lets him away with blue murder, maybe passing the buck but honestly, I've never let him have his own way so I just couldn't see it.

I wanna pull my hair out! LOL

 

[Tiff]

I know how you feel. I found this quite interesting when trying to figure out the difference between a sensory meltdown vs a classic temper tantrum.

Putting in spoilers as it is long

Spoiler

Most doctors indicate that Autism meltdowns can last anywhere from 10 minutes to an hour and by the end of it both the child and parent (or caregiver) are exhausted. But how can you tell if your child is just having a quick tantrum or an actual meltdown? And how do you prevent full blown meltdowns from occuring? Autism/Aspergs Meltdowns are more seen in boys rather than girls but can occur from both genders. Studies have found that girls with these disorders tend to hold in their feelings and cry rather than converting to anger.

Please note before I begin, that you should know, even a child with ASD & Aspergers can experience normal, everyday tantrums. I have seen this first hand with my daughter, Michelle. She is 31 months old and when her sister's home it feels like all I here is grunts, screams, and crying from her because her personal space & toys are being invaded.

These "mini-meltdowns," as I call them, can last from 10 seconds to 5 minutes or longer. Michelle does not verbally communicate so these mini-meltdowns are her way of say "Hey, you are in my space," or "That's my favourite toy, don't touch!"

Be cautious though because these mini-meltdowns are acting as words for the child and can quickly escalate into a full blown meltdown if the situation isn't taken care of right away!



The Basic Temper Tantrum:
A basic temper tantrum is very straightforward. A child does not get his or her own way and, as grandma would say, "pitches a fit." This is not to discount the temper tantrum. They are not fun for anyone.
Tantrums have several qualities that distinguish them from meltdowns.

* A child having a tantrum will look occasionally to see if his or her behavior is getting a reaction.
* A child in the middle of a tantrum will take precautions to be sure they won't get hurt.
* A child who throws a tantrum will attempt to use the social situation to his or her benefit.
* When the situation is resolved, the tantrum will end as suddenly as it began.
* A tantrum will give you the feeling that the child is in control, although he would like you to think he is not.
* A tantrum is thrown to achieve a specific goal and once the goal is met, things return to normal.



Autism/Aspergers Meltdowns:

If the tantrum is straightforward, the meltdown is every known form of manipulation, anger, and loss of control that the child can muster up to demonstrate. The problem is that the loss of control soon overtakes the child. He needs you to recognize this behavior and rein him back in, as he is unable to do so. A child with autism in the middle of a meltdown desperately needs help to gain control.
* During a meltdown, a child with autism does not look, nor care, if those around him are reacting to his behavior.
* A child in the middle of a meltdown does not consider her own safety.
* A child in a meltdown has no interest or involvement in the social situation.
* Meltdowns will usually continue as though they are moving under their own power and wind down slowly.
* A meltdown conveys the feeling that no one is in control.
* A meltdown usually occurs because a specific want has not been permitted and after that point has been reached, nothing can satisfy the child until the situation is over (even giving in to their want).
* During a meltdown the child will roll, scream, cry, kick, and even injure others or theirselves unknowingly.

Unlike tantrums, meltdowns can leave even experienced parents at their wit's end, unsure of what to do. When you think of a tantrum, the classic image of a child lying on the floor with kicking feet, swinging arms, and a lot of screaming is probably what comes to mind. This is not even close to a meltdown. A meltdown is best defined by saying it is a total loss of behavioral control. It is loud, risky at times, frustrating, and exhausting. Although not all children will injure themselves or others

Meltdowns may be preceded by "silent seizures." This is not always the case, so don't panic, but observe your child after she begins experiencing meltdowns. Does the meltdown have a brief period before onset where your child "spaces out"? Does she seem like she had a few minutes of time when she was totally uninvolved with her environment? If you notice this trend, speak to your physician. This may be the only manifestation of a seizure that you will be aware of.









Here are 10 steps to assist in tantrums & meltdowns.
1. Remain calm. Control your anger.



2. Never give in. If you said no, stick to this answer, no matter what.

3. Be sure to go out with your child only when he has eaten and rested. A need that isn’t met is often the cause of a tantrum or meltdown.

4. Say to your child that you understand his frustration or anger. Be compassionate and give an alternative option. If you child doesn’t want it, fair enough, he’ll have nothing at all. Dealing with tantrums takes firmness and understanding.

5. When the meltdown starts, remove all unsafe objects from the area. Help him focus on something else than what bothers him at the moment. React fast before your child becomes out-of-control.

6. Consider a reassuring cuddle. Although this doesn't work with all Autistic children. My I hold my daughter tight in a hugging position and make "Shhhh" sounds in here ear. This seems to help ease the length of her meltdowns (and also ensures she is not hurting herself).

7. After the tantrum, at the end of the day, when your child is quietly playing or before kissing him goodnight, discuss his tantrum with him/her. Speak softly and explain that you can’t accept his behaviour but that you love him anyways.

8. Avoid his/her "trigger moments". In the long run, meltdowns will occur regardless of praise and efforts so the main piece of advice is to avoid any situation where your child will feel uncomfortable, overwhelmed or where the routine will be affected. Go grocery shopping when the child is at school, in bed, or begin a new "10am grocery store visit" in his/her routine.

9. When a tantrum occurs in a public place, safely remove the child from any area of harm, and away from the "trigger point."

10. Legitimize his feelings of frustration and anger and tell him you feel the same sometimes but you always choose to express them with words and that he can make that same choice. If your child is non-verbal I suggest a "stress ball" or picture book so your child can show you his/her feels before a tantrum occurs.


ESSENTIAL:
When your child launches into a meltdown, remove him from any areas that could harm him or he could harm. Glass shelving and doors may become the target of an angry foot, and avoiding injury is the top priority during a meltdown.

Source: Girls with ASD & Aspergers

 

[ashley_gee89]

Wow. Thanks for that! It's definitely a bit of both with Kyle then. He has the regular tantrums, as all toddlers do. But when he woke at 1am the other night I tried to put him bak to bed and now I've read that, a definite meltdown occurred. He just didn't know what he wanted or why he was upset.. In the end a drink calmed him (which I had offered several times) and a big cuddle (again, had been offered).. This went on for a good 45mins before he calmed though & he kept banging his head off the wall

 

[Midnight_Fairy]

Does he get sensory overload? My sons meltdown triggers are: noise, tiredness, strong smells, being hungry (he eats little and often), change in routine, waiting, busy people.

Of course some are just him being a typical 8yr old but as they get older you start to pick up and maybe potentially avoid some meltdowns x

 

[ashley_gee89]

I think he does, tiredness would be one for him too but then that's normal right?

 

[Midnight_Fairy]

yeh but how they deal with it. My DD will sit down, lay down and read or watch tv when tired, my son will fight it and then play up to try and keep himself awake, the private OT suggested they do this for an adrenaline rush to keep themselves awake and enjoy the negative attention x

 

[ashley_gee89]

Yey a bit of progress!

I got a txt MSG the other day from my hv saying the doctor will be in touch the beginning of October & I got a letter this morning for Kyle's speech & language therapy which is for 12th Sept at least things are moving now