Parents with children who have autism

[jessicasmum]

Hi I'm a mother of 3, I have a 11 year old daughter, nearly 28 month old daughter and a 3 week old son.
My nearly 28 month old daughter is the one I have my concerns about and I've been doing a lot of searching on God knows how many sites and there are quite a few similarities to children with autism.
Here's the similarities that I've come across:

She doesn't talk

She doesn't really communicate in any other way

She doesn't play with toys

She sometimes rocks (which I use to think was her dancing)

She chews everything/puts anything in her mouth including her own poo

She flaps her hands in front of her face

She sometimes smacks her head or face/presses her hand quite hard up against her nose

She has sleep problems where she'll be up in the early hours and won't go back to sleep, she'll either be screaming/crying or being really giddy

Skin problems/itching (doctor said she has eczema though)

Does similar things a lot like she goes up to walls and touches/slaps them

Stomach issues/windy and discomfort

Not sure if I've missed anything out there. She starts playgroup on Monday and we want to see how she deals with a learning setting and also with children her own age, hopefully the nursery nurses will give helpful feedback regarding her delays.

So my question is does my daughter's symptoms sound like your child/children who has autism? I've not spoke with anyone with experience with this before only done Google searching, so would be great if I could get feedback from other parents.

Many thanks in advance

 

[smurff]

Hi, my 4 year old daughter has learning difficulties and is delayed with sensory issues, and autistic traits. Have been told by lots of health professionals that's she definitely autistic but we just haven't got official diagnosis yet.
To be honest alot of what your daughter does my daughter does aswell.
My daughter has limited speech
Isn't potty trained
Will stay awake till late and if she wakes during nite she stays awake
Gets very frustrated
Bangs her head on walls and floors
Didn't know how to interact with other children
Would love being around children but didn't want to join in
Can't walk up and down steps on her own
Flaps her hands and feet
Never played with toys
Amazing with anything technical
Used to chew on things
Hates loud noises
Likes her own space
And if she says something she will keep repeating it till you say it back to her.
I always knew something was different about my daughter, she never really reached milestones on time. We took her nursary and they picked up on her language straight away, she went to speech therapist who referred her to a child development clinic. That's when we found out the extent of probs and I was told about autism.
One piece of advice I would give is don't Google, it will drive u mad and alot of things they talk about as symptoms ain't really symptoms at all and children without autism can do them. The hand flapping I've heard is normal for any child to do.
Why not talk to your hv and see if they will come round and do a quick test on her. Have a word with nursary first and explain your concerns so they can keep a special eye on her.
I hope everything works out for you. Let us know how she gets on

 

[lusterleaf]

I would get her evaluated based on what you wrote. My son was diagnosed at 19 months old but some "red flags" that caused me to get him evaluated were: Did not talk, did not answer to his name or follow one step directions, had a fascination with opening and closing doors/cabinets, turning the lights on/off, did not play with toys appropriately, such as, spinned the wheels of a toy car.. spinned while looking out the corner of his eyes. Also, many children with autism have GI issues. At 2.5 we took him to a GI doctor and he was diagnosed with celiac disease. We try to avoid gluten now as best we can and we also give him a daily probiotic and put it in his drink. His Early Intervention teacher said she noticed a big difference in his behavior once we started the probiotic.

 

[happycupcake]

I know you posted a while ago but thought I would reply anyway.
My four year old son is diagnosed with autism (he's almost 5). We didn't suspect anything at first, I think the first thing we were concerned about was his speech. Initially, because he was slowly learning new words, we left having him referred to give him time but it became obvious that there was more to it than simply delayed speech because he started to display many more signs:
Delayed speech
Isn't potty or toilet trained
Is only just starting to follow some simple instructions (pass me this, put this over there, shoes on etc.)
He has proper, full on meltdowns about incredibly trivial things (I'm sure they aren't trivial to him, though!)
Doesn't engage with imaginative play
Doesn't engage with other children
Has obsessions with things like wheels, windows, hair etc.
Knows his way around an electronic device marvellously
Will build tall towers but won't stretch to building say a simple house
Becomes overexcited to the extreme, giddy, a little like a ferret does!
Doesn't recognise facial expressions unless extremely obvious
Is a picky eater
Has digestive issues (chronic constipation)
Struggles when routine is disrupted
Doesn't always make good eye contact, although is better with that with us
Doesn't have a good grasp of danger (knows to wait for the green man at a crossing, for example, but doesn't know why despite attempting to explain)
Parrots literally everything you say and will keep saying the same things a number of times
Flaps hands
Hits himself

Probably lots more but I can't remember off the top of my head

Our daughter is three, almost four. She is currently undergoing the assessment process. It was less obvious in her until recently, but it was her speech which flagged up for us first, like her brother:

Little speech (she has quite a few words, but doesn't usually use them in context and can't speak in basic sentences)
Can't gesture
Her way of communicating is to scream at you until you figure out what she wants
She's funny about her own personal space, like you can't give her kisses for instance
Her attention span is incredibly short
Is super fussy with food, more so than her brother
Lines everything up neatly
She will engage in imaginative play quite well, but won't engage with other children
She has absolutely zero concept of danger, she would happily drag you into oncoming traffic if you allowed her to
When out all she wants to do is walk, she doesn't want to stop anywhere and will scream if you do
Doesn't respond to her name
Has odd ways with clothes - will want to be completely naked even when it's freezing, or will constantly want to wear everything all at once
Has meltdowns about what I couldn't tell you most of the time
Flaps hands and feet
Will become violent
Has phases of awful sleeping patterns - will wake during the early hours and won't go back to sleep without white noise, sometimes she will stay awake despite doing this
Doesn't like it when people laugh
She can name colours and numbers and some letters
Doesn't understand facial expressions at all
Can't follow basic instructions
Doesn't like her hair being touched
Gets on fab with electronic devices and traditional puzzles

Sometimes theres a genetic link, is there anyone in your or your OHs family with autism or suspected autism? Sometimes there isn't a link of course. There is in our case.
Having her in nursery will provide some good info, as you know autism is largely a social condition as well as sensory, so gauging how she is with other children regularly and other adults will give you a much clearer idea. It is much harder in many cases to recognise and so diagnose in girls than boys since girls seem to be naturally more social creatures and tend to engage in imaginative play more so than boys too. You already have an older daughter, so you can compare to a certain extent which could be helpful to you, from you older daughter's earlier years to your youngest daughter now. Some milestones she may meet fine, our children were walking within the average timescale, for instance. Speech delays can be caused by other things too such as hearing problems, have you had those ruled out? If you haven't, it's definitely worth doing, unless you know for sure her hearing is fine. We knew our children's hearing could be selective, but there wasn't an actual problem with it. But this isn't the only problem that can cause speech delay, so I think it's wise to mention it.
Autism is quite common, and many many children with an ASD diagnosis live perfectly normal lives with a little help along the way. It's a spectrum condition after all, which means there will be higher and lower functioning, and everything in between. But if she happens to struggle a fair bit, don't panic about it because there's a wealth of knowledge and help there, and once you realise what your child gets on with, things can fall into place surprisingly fast. I don't know how you feel about your daughter potentially having an autism diagnosis but I know many people are quite afraid and daunted at the prospect, I was at first as was my husband. You have so many questions, but you do start to see in time that the things you once saw as these impossible obstacles can be overcome

 

[jessicasmum]

I know I posted this thread a while ago but took a bit of a break from bnb so sorry for only replying now.

Thank you ladies for your replies.

Jasmine has had two 2 year checks now, one with the health visitor at home and one at her playgroup, both have shown shes delayed in all areas. At playgroup they said she doesn't play and walks about chewing her t-shirt and also doesn't talk, one of the nursery teachers said she thinks she's got selective hearing.
The health visitor after her review has referred her to an audiologist, speech and language therapists and a paediatrition. She's been twice now for her hearing checked after 1 failed attempt, the 2nd time they managed to part of it while she only kept still with the things in her ear while she watched a tv programme on hubbys mobile, the other part was she was meant to turn to a toy that made a noise across the room but she didn't so they are waiting 6 months to try again when they are hoping she will be comunicating some by then, the first part of the hearing that she managed to do they said all was fine with her ears/hearing. I really do think that there isn't an hearing problem at all and it is just selective hearing because she mostly doesn't respond to her name but if there are other sounds for examples: food wrapper being russled, key in the front door, song/tv programme comes on tv she will all turn for.
We have her first paediatrician appointment for 25th May but we still haven't heard from the speech and language therapist which I'm getting annoyed about because we really need to start getting support so she can start to take steps of learning how to communicate.

Do any of your children if at school age have to go a special needs school or are they in a mainstream school? We are far from this yet because Jasmine will be at playgroup until July 2018 and then school nursery from September 2018 before reception class in September 2019.

Also did any of your children use PEC cards to help to talk/communicate?

To answer the question no neither on my family side or hubbys that we know of no one has autism. Do you believe if it's not genetic that something in pregnancy and at birth could of caused something? I ask because there was a number of things; I had to have an emergency appendix operation when I was 20 weeks pregnant with her, there was loads of fluid surrounding her in the womb, she was breach, I had a planned c-section but the spinal didn't work so had to have a general and she was deprived oxygen at birth.

 

[happycupcake]

Our youngest daughter we suspected had a hearing problem initially, until it became rather obvious it was selective hearing! Much in the same way as your daughter - wouldn't respond to her name being called but would turn to see favourite TV show etc. She is more responsive nowadays but can be selective with her hearing.

My eldest went to school, mainstream, and only struggled with noise and sometimes bullying. Bullying any child is at risk from in any school, although I think in autism it's harder for them to make friends so it's important they are perhaps given a safe place to play or eat lunch if they don't like being too social, or if they enjoy being social but simply struggle with how to be social, then being given a small group of friends is quite a common thing at school (like a buddy system) and can be a lovely positive experience and help to give friendships a kickstart.
The other two don't attend nursery or school as we have chosen to home educate them.
With the youngest two we have used the PEC cards and they are fab. They have helped miles with the four year old but youngest daughter didn't quite get the hang of them. Something I think she will do in time, given she is that little bit younger as well.
It wouldn't hurt to give speech & language a call to chase up her referral, and also ensure it hasn't got lost (our daughter's did!).
I asked the same questions pretty much, could I have caused this somehow in pregnancy, was there anything that could have caused it but the answer is there isn't. There isn't anything you could have done differently, and nothing you experienced during your pregnancy and her birth would have caused this. It is what it is, sometimes it's hereditary and sometimes it isn't. They can offer genetic testing, if you want it

 

[smurff]

I have always blamed myself for my daughters difficulties, I read that epidurals, prolonged labour, and forceps can cause autism. I had all 3!, but like my hubby said, there are thousands and thousands of women who go through prolonged birth and forceps delivery and thier children don't have autism, we don't have anyone in the family with autism but since having my daughter and all the info we have gone through I suspect I am on the spectrum somewhere,. We went for genetic testing last August, I'm dreading finding out if I am somewhere on the spectrum cause then I never will forgive myself

 

[jessicasmum]

Our youngest daughter we suspected had a hearing problem initially, until it became rather obvious it was selective hearing! Much in the same way as your daughter - wouldn't respond to her name being called but would turn to see favourite TV show etc. She is more responsive nowadays but can be selective with her hearing.

My eldest went to school, mainstream, and only struggled with noise and sometimes bullying. Bullying any child is at risk from in any school, although I think in autism it's harder for them to make friends so it's important they are perhaps given a safe place to play or eat lunch if they don't like being too social, or if they enjoy being social but simply struggle with how to be social, then being given a small group of friends is quite a common thing at school (like a buddy system) and can be a lovely positive experience and help to give friendships a kickstart.
The other two don't attend nursery or school as we have chosen to home educate them.
With the youngest two we have used the PEC cards and they are fab. They have helped miles with the four year old but youngest daughter didn't quite get the hang of them. Something I think she will do in time, given she is that little bit younger as well.
It wouldn't hurt to give speech & language a call to chase up her referral, and also ensure it hasn't got lost (our daughter's did!).
I asked the same questions pretty much, could I have caused this somehow in pregnancy, was there anything that could have caused it but the answer is there isn't. There isn't anything you could have done differently, and nothing you experienced during your pregnancy and her birth would have caused this. It is what it is, sometimes it's hereditary and sometimes it isn't. They can offer genetic testing, if you want it

Do you mind me asking why you decided to home school your younger two? Do you get a lot of support to be able to do this?
Also you said it was genetic with your family, is there someone else outside your children that has autism?
The health visitor did ring for a catch up last week I think it was and she was quite surprised about speech and language therapist not being in contact. We are in the process of moving and will be moved by 13th April so will need to make contact with health visitor etc to inform on new address and phone number so I think be a good chance then to chase up the referral.

 

[jessicasmum]

Questions for you both, how does the genetic testing work? Is it a test on me and hubby or my daughter? Do I need a diagnosis for my daughter first?

I do worry even though there is no known family history that it is genetic, my eldest definitely no signs but my youngest is only 3 months so still way off from knowing. We are actually considering trying for #4 possibly in 2 years time but I do worry about coping with the challenges that lie ahead for DD2 and also not knowing if my youngest or possible next child will have autism too.

Can I ask how your partner's were before the diagnoses of your children? My hubby I think was in denial and maybe still Is, he got so annoyed with me when I said I think it's autism, I think it hit him a bit more though when we had the health visitor review.

 

[happycupcake]

We decided to homeschool them because in part their communication difficulties concerned us when thinking of them being in someone else's care. The schools and nurseries here we don't feel are of a particularly high standard (the places within our reach, anyway) and didn't feel secure. Some of them were allowing young children to wander around unattended up and down floors, their 'security system' was merely a sliding lock which is easily figured out and undone by any child tall enough to reach. The others didn't seem particularly attentive to SEN and didn't seem to offer much in the way of individual support, saying they wouldn't offer this in some instances. So, we felt that they would be safer with us, and since we don't have a bunch of other children to watch and teach, we can offer more in the way of one-to-one education.
We also felt that other people would struggle to handle their meltdowns, whereas we know how to deal with them. Sometimes what we do doesn't pan out but it usually does, eventually anyway! We couldn't stand the thought of them having a meltdown and being unable to calm down from it, being away from any familiarity and those who know how to help.

Financially, there isn't any help available for those who opt to homeschool. Which to be honest, I think takes the biscuit somewhat. You still have to buy in resources, go to places etc. and it all costs a lot! A decent set of books for an older child on a single subject alone can cost upwards of £50 if you want a decent range. Then there's all the practical stuff too, which you don't think will add up to much but it does. We currently don't drive, so if we wanted a day trip anywhere it would mean the expense of public transport as well as any entry fees, depending on where it was.
For those with SEN you can access support in the way of play therapy, speech & language, a paediatrician etc. you can claim disability living allowance which obviously helps with certain things, so this could be used to help in education. You are meant to be able to access help via your local authority as well but in all honesty our experiences with our local authority have been merely busybodies demanding proof of an education (of which you aren't under any obligation to provide, and you don't have to allow any visits) and despite me asking a number of times for help with specific things and being told they can help, they have yet to come up with the goods, as it were.

With the hereditary thing, I have a diagnosis of Asperger's. My husband has traits but I don't think any more than anyone else does to be honest, I don't think he is on the spectrum.
I think if you are offered genetic testing you and your husband would have it done, I think, because they would be looking for any pointers on both sides I would have thought. It hasn't been explained to me by them, only briefly mentioned at our son's previous appointment. I would think you have to have a diagnosis first, unless you paid for private testing and then I guess you could have it done with or without a diagnosis.

The chances of any future children having an ASD, or indeed any other issue, is probably virtually impossible to know in advance. I think genetic testing would give you a better idea, if you or your husband show anything, but even then I doubt it's absolute. The thing is, you could have a completely neurotypical couple have an autistic child and any number of further children without autism, or any other issues. You could, by the same token, have parents on the spectrum but children who aren't, or a mix, or all on the spectrum as well. It could go any way with any parental set up. I think genetic testing could potentially offer more insight but I don't think it can give you a definitive answer in terms of risk to future children.

My husband was concerned, and to a degree didn't want to know. I think he was frightened at first to know for sure, I guess because then you can't hide from it and it does seem scary at first. But then walking into anything unknown is scary. He worries they won't lead a normal life, that they won't learn to communicate properly and he won't ever be able to have a proper conversation with them, things like this. But in part this is because his previous job involved a secure unit with some patients on the more severe end of the spectrum, so this was his only firsthand example of autism before he and I met.
It's different since he's had time to think about things with more clarity and seen how quickly things can change when you introduce new methods of learning. When they cotton onto something quickly and it helps them communicate that little bit more, his confidence improves as well and he has started to realise that their future isn't necessarily (or even likely) a bleak future!
I think it's natural to feel anger sometimes when you are faced with something that inevitably does change how things are, it changes your ideals and your life. It doesn't mean it has to be in a negative way, and I think when they realise this things start to fall into place more

 

[happycupcake]

I have always blamed myself for my daughters difficulties, I read that epidurals, prolonged labour, and forceps can cause autism. I had all 3!, but like my hubby said, there are thousands and thousands of women who go through prolonged birth and forceps delivery and thier children don't have autism, we don't have anyone in the family with autism but since having my daughter and all the info we have gone through I suspect I am on the spectrum somewhere,. We went for genetic testing last August, I'm dreading finding out if I am somewhere on the spectrum cause then I never will forgive myself

I don't think there's proof, as in proper scientific proof, that any of those things cause autism. I think these have been looked at just as many other things have, in a bid to find out what causes it because the causes are so largely unknown. Autism is quite new, in a way. But when you look at it rationally, as you pointed out there are millions of women having had all those experiences and have had children who aren't on the spectrum. There certainly isn't any significant risk with these things, otherwise they would have listed it as a cause officially. It's just speculation, but there's more to show autism is potentially hereditary than anything. I don't know about environmental. A lot of outside things could potentially cause x, y & z but equally may have absolutely zero impact as well.

If you find that you are yourself on the spectrum, why should you feel guilt? What if your husband was found to be on the spectrum? Would you blame him? I don't think you would? Perhaps I'm wrong, but I don't think you would. As I said in my above post, you could have both parents on the spectrum and have children without a trace of autism, just like you can have 'normal' parents but who have children with autism. There's little point in blame and guilt because even if you do have an ASD, it still doesn't mean that you caused your child to have autism. Sometimes it just happens, and there isn't any way of knowing who it will happen to! You don't have any part in this, you didn't cause this.

Don't look upon autism as an awful thing - there are many, many amazingly good points. And to be honest, there is only a single difference, the brains of neurotypicals and those on the spectrum are wired slightly differently, causing us to interpret the world in different ways. Sometimes this has a huge impact, sometimes it's barely noticeable (autism is actually extremely common, and even amongst neurotypicals they will themselves show traits so it could be said we are all autistic). Your guilt would be better transformed into positivity in the way of being proud of your daughter's differences (how boring would it be if we were all the same), learning the best ways to tap into how she learns, and encouraging her in those things people call 'obsessions', which I prefer to think of as that child being an expert in a certain area (for example, my eldest is an absolute expert when it comes to trains and cars and also creating online games).
Don't feel guilty, you don't have anything to feel guilty for

The vast majority of conditions are little more than a health lottery. It's how you deal with them if/when they happen that counts

 

[smurff]

No your right I wouldn't blame my husband if he was on the spectrum, I'm just naturally hard on myself.

I definitely don't look at autism as an awful thing, I don't know if you've seen any of my other posts but I am immensely proud of my daughter and I'm so proud to be an autistic mum. Ive said all along that if someone said they could give my daughter a magic pill to make all her probs go away I would never in a million years give it to her. Her autism is what makes my daughter who she is and I wouldn't change that for the world, she is amazing at anything technical, so much so that she would put many an adult to shame. She can do 50 piece puzzles in minutes, she can hear things before anyone else, she's my little super hero . She is so loving and so caring and thoughtful, she's also stubborn and likes to do things on her own terms and won't be pushed around by anyone. I always worried she'd never make friends or cope with school, how wrong was I, she has a massive group of friends in her specialist class but also in the mainstream school aswell! At playtime they all want to play with her and on my way home the amount of children who call out to her is unbelievable, I burst Into tears with pride when her teacher told me the other day that she is one of the most popular girls in her year. Yes it would be boring if everyone was the same. My princess is one of a kind and I'd never ever change a single thing about her.

 

[happycupcake]

Sorry, I do apologise if my post came across as if I didn't think you were proud of your daughter. I worried it may come off like that, but I find it difficult to put thoughts into words

 

[jessicasmum]

I love my daughter and all my children no matter what and the thought of autism is scary I will admit but I'm more scared about myself not being good enough for her. I think she's an amazing little girl just like you both obviously think about your children too. You both sound like such great mum's how you are coping and getting the help you are for your children. All I want to do is do right by her and get all the help she needs.

 

[smurff]

Sorry, I do apologise if my post came across as if I didn't think you were proud of your daughter. I worried it may come off like that, but I find it difficult to put thoughts into words

No it didn't come across like that it's fine, I really appreciated your reply, reading my reply back did sound like I was accusing you of saying I wasn't proud of her but I didn't mean it to come across like that. I always think the way I say things can Come out wrong but I can never think of another way to say them

 

[smurff]

I love my daughter and all my children no matter what and the thought of autism is scary I will admit but I'm more scared about myself not being good enough for her. I think she's an amazing little girl just like you both obviously think about your children too. You both sound like such great mum's how you are coping and getting the help you are for your children. All I want to do is do right by her and get all the help she needs.

Of course your a great mum, the fact your on hear wanting to get help and worrying your not a good mum just proves that. Of course autism is scary in fact it can be bloody terrifying, when I was told about my daughters autism I wasn't thinking Oh well I don't care she is who she is, I was in tears thinking what sort of life will she have, will I be able to cope, will make friends will she be able to go school, there was so many questions. I was luckily I got the help my daughter needed, she has an amazing team around her. I wouldn't say I'm a great mum I just do my best, you just have to get on with things at the end of the day. Yes it's been a struggle getting her EHCP and getting her into her school but you take each day as it comes.
Your a great mum and you'll be amazed at what coned naturally when dealing with autism

 

[happycupcake]

Sorry, I do apologise if my post came across as if I didn't think you were proud of your daughter. I worried it may come off like that, but I find it difficult to put thoughts into words

No it didn't come across like that it's fine, I really appreciated your reply, reading my reply back did sound like I was accusing you of saying I wasn't proud of her but I didn't mean it to come across like that. I always think the way I say things can Come out wrong but I can never think of another way to say them

I just wanted to ensure you knew I didn't mean I thought you weren't proud, your post didn't seem accusing
It can be so tough to type how you mean in your mind, for it to sound the same

Jessicasmum - I don't think you have to worry because the fact you do worry shows you are already a fab mum! You are doing everything you can, and all anyone can do.
I think it's probably quite common amongst parents to worry they are doing everything they can. I think it shows you are a good mum, because if you weren't then you wouldn't be bothered and wouldn't worry.
I am always questioning myself, whether we/I am doing the right thing by them, could we do more, have we missed anything etc.
We don't always feel as if we are coping, you have good days and days which are tougher but it isn't unusual I don't think

Happy Mother's Day to you both, by the way

 

[jessicasmum]

Thank you both of you. Thank you also for taking your time and sharing with me. I know it's not confirmed about my daughter yet but it's nice that there is others that I can share my worries with.

You mentioned about fussy eating with your children, I was wondering are they always fussy or sometimes go through stages of normal eating? With my daughter she'll go through stages of eating a lot and eating pretty much everything to other times she'll be really fussy and only really eat bread based things.

Oh and thank You, I hope you had a lovely mothers day yesterday

 

[happycupcake]

All our three have been/are fussy eaters. First son, his diet was ridiculous from about 18 months onwards but he is MUCH better these days and will give anything a try which is wonderful. The youngest two go between being super fussy to eating everything in sight but more frequently are fussy. They do love their fruit though, which is good and pretty much the only thing I can be confident they will definitely eat! It's pretty usual, especially in ASD, they may be fussy with the texture of something rather than flavour - I would love the taste of some foods but hate the texture when I was little. I like the taste and smell of bacon today but can't stand the texture. I'm actually a veggie lol! But love the smell of some meat.
Apparently it takes at least fifteen times of trying something new to decide if you like it, so it's always worth offering previously disliked foods at some point. Keep reintroducing things. I guess the easiest thing is to always make sure there is something they love on their plate, then at least you know they will eat that even if they don't like the other things

 

[jessicasmum]

Your youngest 2 sound the same as my little girl with eating everything in site and then being fussy, she also loves fruit and will eat any type.
Not sure if you have already mentioned this but do any of your children like chewing things? My daughter likes to spend a lot of the time chewing, her clothes or muslin cloths or anything else she can get her hands on.