Looking for some support...

I feel for you as newborns and special-needs children are difficult to manage independently, never mind together! Sibling jealousy is something so-called 'normal' kids struggle with. Apparently when my brother was born my 2-year old self used to pull his dummy out and smack him in the tummy! My younger brothers fought for years because of it, but they are grown up and get on well now! 

At my son's school I see some kids wearing a padded, fabric helmet to protect them when headbanging. Not sure where they are from but special needs shops online probably sell them. My son gets Disability Living Allowance to cover special needs expenses. We asked his speech therapist to fill out the part where a professional needs to comment. But that could be a paediatrician, or health visitor as well. When filling out the form you will need to emphasize his difficulties and point out all the extra help he needs time and money wise. This might be painful for you, but it's what you need to do to get accepted. You can say you need the support of another person to manage, even if it's just a relative or friend. 

One of the most important things for autism moms is to find ways to manage stress. Even if it means taking a bit of time out for yourself, don't feel guilty as you need to recharge your batteries in order to have the energy to look after your family. 

Lying awake stressing that my LO’s heading banging is going to be doing permanent damage :-( it was quite bad today and we have hard floors (also does it on the walls). Feel awful as we’d reached a point where it wasn’t really happening anymore, so long as I avoided the situations that distressed him. But obviously can’t avoid my newborn. So it’s re-emerged with a vengeance and I’m blaming myself. Any ideas re how to manage? I’d initially been reacting - picking him up if he started, giving him a cuddle etc. But I’ve recently started trying ignoring the behaviour and just trying to explain to him why I have to pick up/feed the baby (it’s almost always related to the baby making a sound atm). I’m sure there’s a lot of jealousy going on (as well as disliking the noise of a baby crying), as I’m still breastfeeding my 2 year old- and prior to the baby coming along he had unlimited access - whereas I’ve had to put some boundaries in place now. Which of course I also feel bad about

My son is 4 and a half and also holds his wee/poo in until his pull-ups are back on. I suppose he is having trouble accepting the idea of doing his business in the toilet instead of his nappy. They have started him on PECS at school and we are about to start using it at home. Hopefully he will be able to show people the toilet picture when he needs to go, as he won't ask verbally. Obviously we can't force him to wee on it, though! We did try letting him wear underwear, hoping that when he wets himself he would understand the need to use the loo. However he just kept widdling everywhere, then had a meltdown when I wouldn't let him go in his carpeted bedroom. More recently I have played him some kids toilet songs on YouTube to make the idea of toileting entertaining. You could try this one:

https://m.youtube.com/watch?v=dAUb72pYDMs

Good luck! 

hi there ,
Reading this has really lightened my mood coz I agree with what you just said. My 3 year old boy has just been diagnosed and has similar behavior patterns described above especially regarding melt downs and change of routine. 

it’s like a grieving process as every parent wants their child to thrive to their full potential and naturally as a parent of an autistic child you tend to worry more. I suppose the fear of them becoming isolated or lacking in their academic achievements takes over sometimes. So therefore reading posts like this remind us that we need to stay positive and pass that positivity and encouragement on to our children. 

it becomes really hard to deal with sometimes as am a mother of three and my son is the middle child and due to his needs, sometimes it feels like am neglecting my other two daughters. 

my son is almost non verbal , he has just started to say mama which meant the world to me!! However I was wondering if anyone can give any advice on how to potty train my child (3 years) when he is Not yet talking? he doesn’t seem to understand the idea of relieving himself on the potty as he tends to hold it in until I put his pants back or pull up. Any suggestions please? 

thank you 

Thank you so much - all of this is so  reassuring to hear. And you're so right about others being ignorant and therefore ill equipped to judge; I think I just need to have more confidence in my own convictions about what's best for him (and grow a thick skin!). 

I also agree that finding playgroup etc. difficult might relate to noise/brightness etc. (as well as the social elements). I've bought him a pair of ear defenders but he's refusing to try them on at the moment and I'm not sure how to explain what they do! I've been wearing them to try and encourage him, as I'm sure he'd love them if he realised what they did! A big problem at the moment is that I have a newborn and my 2 year old head bangs every time he cries (I assume this is partly the noise, and partly him communicating that he doesn't like the attention the baby gets as a result of crying). Very tricky to manage. 

Bless you for spending all that time indulging your son's train obsession. You're being a great mom. Mine loves trains too and is a complete petrol-head! He doesn't want to do most things I suggest and I think it would be easier to get the sky to turn green! I have found it's best to go along with his interests and use them as a tool to encourage interaction and speech. I think a lot of people don't understand that it's extremely difficult to get an ASD person to change their behaviour and to do so often requires specialist tactics and weeks/months/years of patience. It doesn't mean we are bad parents, just that other people are ignorant and ill-equipped to judge - therefore, their opinions don't matter. I am more likely to respect the opinions of specialists and other autism parents, who understand the situation.

We have had to avoid going to places which cause meltdowns and difficult behaviour (lots of places!). I think if you throw your son in the deep end and 'force' him to socialise with other children, it could potentially make the situation worse as he could end up refusing to do it. Some gentle exposure to new activities could be positive, but only if you make it non-scary and comfortable for him. So for example, being in a room playing alongside one familiar child could be a good starting point, to build up his confidence. I'm still struggling to get my son to interact with other children, sometimes he will but mostly he prefers to do his own thing. It's something that's going to take years of practise and guidance as it doesn't come naturally to him. Sometimes ASD kids don't like going to playgroup or school because it's too loud for them, or too bright, or too busy, or whatever. They are extra-sensitive and sometimes busy environments can be painfully overwhelming for them. My son has to wear ear-defenders sometimes in noisy environments.

Ah ok - thank you. That's the stage we're at I think - health visitor about to do the 2 year check, and completing the questionnaires in preparation has highlighted to me that he's not developing in the same way as others his age. So I'm expecting that the HV will refer to speech and language therapy. I recognise the echolalia thing -and repeating sounds (like train horns! - and getting the pitch exactly right!). 

A couple of other questions (sorry!) - over time I've basically ended up avoiding all the situations that distress him. And I'm in a continual process of trying to find activities he can tolerate/enjoy. However, do you think this is the right approach? Some people seem to think I should be forcing him into difficult situations to get him used to them (particularly those involving socialising with other children his age - which he finds really stressful). Also - do you think it's ok that I'm "indulging" his "obsessions"? So for example, at the moment he absolutely loves trains and trams - so I will sit with him as he plays with his train track for aaaaages, put videos of trains on for him, buy him train books, take him to a train museum... etc.! Do you think I should instead be encouraging him to do/play with things which he's less drawn to (i.e. imaginative cooking etc.)? The difficulty I find with this is it's basically impossible to get him to do things he doesn't want to do. Which I think leads to a certain amount of judgement from others. 

No, my little fella wasn't talking at 26 months which is what prompted the health visitor to refer us to the speech and language therapist. He is 4 and a half now and is still not capable of a verbal conversation. His progress has been slow however he has made HUGE progress. His first form of speech was exclusively echolalia, which is repeating words and phrases from TV shows, videos, and other people's speech. However, he will now use a few words to communicate, such as 'No', 'Do you like Mommy's phone?' (which means he wants to play on my phone!) and 'watch Gruffalo'. He has improved a lot with his back and forth interaction, but he is still a long way behind typical 4 year olds. Our speech and language therapist gave us a list of exercises to do at home with him to improve his listening and attention skills and help him understand us better. I once read that an autism diagnosis is not an end result, but rather a starting point to help them develop skills and the younger you start, the better. With help and encouragement ASD kids are capable of improving their abilities. By the way, the umbrella pathway is an autism diagnosis process involving a team of professionals such as teachers, speech therapists, paediatricians, etc. It can take about a year to complete. Our paediatrician referred us for this. She has not given us a diagnosis herself as she says our son is still young and developing and kids can change a lot in a short space of time.

Thanks for replying - really appreciate it. Ok - so would you say referral via GP rather than health visitor then? I've started to make little videos on my phone of certain behaviours in case I need "proof" for any kind of referral. Similar question to above - did you son have any language at around 26 months? And if not did he go on to develop it? Feeling pretty emotional about the thought of us never having a conversation together :-( 

Oh - and can I ask what the "Umbrella pathway" is please?

Thank you so much for replying. I really like your optimistic way of viewing it. I'm trying my best to also see it in this way - but it's tough at times :-( The main thing that's upsetting me atm is the thought that I might never have a conversation with him if he doesn't develop speech. Do you mind me asking if your little boy had language at aged 2 (26 months to be exact!) - and if not when he started developing it? Just trying to work out if no language now means it's unlikely to ever develop. He definitely communicates - just not verbally if that makes sense. 

Hi,

TBH it sounds very much like my little man at that age. But the good news is that there is help out there for both you and your boy. You need to start the ball rolling by making an appointment with your gp and talking through his traits. You will then get a referral and you will be on the way. My son was diagnosed at a similar age and is now 6 at mainstream school. We still have struggles but I now have a good support system in place, which includes this wonderful forum!

Good luck

Hi there,

Your little boy sounds alot like mine, apart from the head banging thing. He does the same things as your son. He is currently undergoing autism assessment on the umbrella pathway. When he went to kindergarten he was assessed by the early years service who got him a place at a nursery assessment centre at a special school. Their assessment was that he qualified for a special school place and he is now having a wonderful time in reception.

I think my son has high functioning autism, which brings positives as well as negatives. He has an amazing memory and capacity for learning and is generally a lovely little boy. However, he finds changes in routine difficult and has regular tantrums and melt downs. It can be very difficult to get him to do alot of things, which is very stressful for me. However, I refuse to see him as defective as there is a huge variety of personality types and abilities. Yes, he may have meltdowns and struggle to communicate, but who is to say he is worse off than a so called normal child? Normal people have all kinds of problems such as gambling addiction, alcoholism, cancer, cystic fibrosis, etc, etc. Things that our boys may be fortunate enough to never experience.

My point is, there is no 'normal', in the grand scheme of things we can't conclude that one person is better off than another. There is a huge list of autistic people who have contributed to society, such as Greta Thurnberg, Albert Einstein, Chris Packham, probably Issac Newton and a great many others.

It's important to focus on the positives, rather than the negatives and to avoid comparing our children with so-called 'normal' children.