Hi, I am new here, looking for advice on how I can help my son please
My son is 7 and a few months back his teacher discussed with us her suspicion that he might be on the spectrum. We were sceptical at first, but as time has gone on, we are more and more convinced that he is. He’s always been very sensitive, emotionally, he’s socially a little awkward, a somewhat picky eater, and he’s keen on facts and collecting things. He has an obsession with lego, and other obsessions come and go. Recently, he seems to be changing and we’re not sure if it’s just that we’re looking for signs, or if his traits are genuinely becoming more pronounced. He knows we are working with his teacher to help him manage things he finds difficult, but not about any assessments, as we felt it might change his behaviour if he was aware.
Right now, I am feeling a little lost, and unsure how to help him. He doesn’t have a diagnosis, so we don’t really know what we’re dealing with, and we don’t have any real support, although school seem to be doing what they can and his teacher regularly talks to us about ways they and we are managing things for him. His sensory issues seem to be increasing - where before he was a picky eater, he is refusing more and more foods he used to like, always has to have the same brand of the things he will eat, and has said he is ‘scared’ of eating something he doesn’t like. He now only wants to wear jogging bottoms, as other trousers are uncomfortable and not flexible enough. The last time he wore a different type of trousers he started screaming and crying, saying that they were hurting him, took them off and wouldn’t put any trousers back on (we didn’t push him to, as it was tea time and we didn’t need to go out) I checked the trousers, there was nothing sharp or rough in them, but the place he said hurt was where the seam was, although I couldnt feel the seam. Since then he has only worn his school uniform and soft jogging bottoms. Labels don’t seem to bother him, but he won’t wear socks when they get a bit old and less stretchy. He’s very reluctant to go out anywhere, and sometimes this will trigger meltdowns - the other day he had a big one because we decided to go out for lunch and to soft play (he eventually calmed down, we went, and he had a fabulous time). He has developed an aversion to certain words (blood and death, and any words related to them). Kids at school have noticed and have started saying them to get a reaction.
I have a feeling I know the answer, but would like opinions on what to do. Do we go with it and accept that this is him, or should we try to help him stop things getting worse? He needs new trousers, as he has grown out of a lot of them - do we just get the soft jogging bottoms he favours or try to get him to wear other types sometimes? Do we let him decide what he will and won’t eat, or should we keep pushing him to try new things? My instinct is that we need to pick our battles - so long as he’ll still wear his school uniform the trousers don’t really matter, so I’m happy to go with it, food wise so long as he’s eating something that resembles a balanced diet it doesn’t really matter if he no longer eats peas or bananas. We do, however, have to go out, and as he has a little sister, he can’t always have his way. This is one of the hardest things as we are not having much success with managing his meltdowns - we have talked about ways for him to calm himself down, but he goes from nothing to meltdown so quickly, by the time we realise it’s happening it’s too late for anything to help and we just have to ride it out. With the word thing, we’ve made it clear he can’t avoid them and we will say the words if appropriate to the conversation, but he has come up with ways to deal with it - he spells the words instead of saying them himself, and if he hears them, he says our dog’s name to calm himself down.
does it sound like we are doing ok? Does anyone have any advice on how we can do better?
What you are doing in relation to "picking your battles" is perfectly ok. You appear to have a lot of insight into and understanding of ASD and how your son could be feeling in relation to some of these things and it's perfectly sensible to encourage him to compromise where he can but to understand that the rest of the family have their needs too. Children need to stretch themselves to grow, sort of thing, and you'll recognise the times this is and isn't possible for him - you're doing it already. Your instincts as a parent are rarely wrong and that doesn't change just because you've been blindsided a little by the possibility of ASD.
You say that your son's behaviour has only very recently gotten worse and that you "felt it might change his behaviour if he was aware" of everyone's concerns re. ASD - do you know for a fact that he doesn't know? Leaflets / letters found in a drawer, overheard telephone conversations or conversations between you and your partner (or even two teachers)? It's very possible that your son does know. A bit of a 'Catch 22' to find out though obviously because asking him means telling him.
Children do tend to pick up on and know a lot more than their parents give them credit for as I'm sure you'll remember yourself from that age. Seeing as his sudden behaviour changes coincide with the extra help your son is receiving at school, there's a lot there for him to pick up on even if he hasn't actually overheard or read anything. Just the fact that he is receiving help for the 'big things' will make him feel more sure about revealing the 'little things' too.
Or having this help at school explained to him, the reasons why it's being given and how it's expected to help, that gives your son the language with which to explain his difficulties and a framework from which he can map others. Has his teacher, for instance, said during your conversations that your son is "scared of" something that she's helping him with? Before he later revealed he is "scared of" new food? It appears that he's found a way of communicating his anxieties and exploring them whether he knows about ASD or not.
Of course, you knowing which traits to look for WILL make you see signs of them, but that doesn't mean you're imagining it. Keep talking to him and acknowledge that you can see he's exploring these anxieties but that each one is more like a lego brick than a lego tower - each individual issue can be worked with on it's own merits and needn't be a fait accompli. Even once you have built up a 'lego tower' of his specific requirements / anxieties, he's growing and changing all the time and he needs to feel secure in remodelling that 'tower' every so often as he learns new skills / tastes new foods / tries new things.
This isn't advice on how to "do better" because I don't think anyone can do better than their best. As a parent myself though, I found I often had to learn to "do differently". One lego brick at a time : )
It sounds like you are already accessing lots of helpful information, but you might like to find out more about autism and the diagnosis process on the NAS website, I'll put some links in below that you might find helpful.
There's a page on sensory differences, which might be useful given what you are saying about clothing and getting out and about: http://www.autism.org.uk/about/behaviour/sensory-world.aspx
But you may like to read our general information about autism:
If you were interested in finding out if your son is on the autism spectrum, they would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one:http://www.autism.org.uk/about/diagnosis/children.aspx
If you are looking for a diagnosis for your son, it is very important that you see someone with experience of autism spectrum disorders. Details of diagnostic services can be found on our Autism Services Directory: http://www.autismdirectory.org.uk/services/autism-services-directory.aspx
You may also want to look at our section that provides advice for parents, relatives and carers of people with autism.http://www.autism.org.uk/living-with-autism/parents-relatives-and-carers.aspx
It might also be useful to pass on information about autism to health professionals when seeking a diagnosis. The following page includes information for a range of health professionals: http://www.autism.org.uk/Working-with/Health.aspx
You may like to have a read of the National Autism Plan for Children to see what you are likely to expect and what you can ask during the assessment . Please scroll down to the bottom of the page and go to page 3 on summary report, page 11 for full report for the Essential Components for a complete multi agency assessment:
If you have any other questions, or wanted some advice, you may like to contact our Autism Helpline team. They can provide you with information and advice. You can call them on 0808 800 4104 (Monday to Thursday 10am to 4pm, Friday 9am to 3pm).Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an advisor.
It sounds like you're doing a great job so far! You're caring, learning and working to understand.
I can only give you my own perspective, as an autistic adult.
Regarding the clothes, what damage is he doing asking for jogging bottoms? That's the perspective, I think. They're available to buy relatively easily and cheaply, and he's not harming anyone by wearing them, so there is really no need to feel like he should wear different types of trousers. It honestly makes no difference, at his age, whether he wears jogging bottoms or jeans in his free time. As an adult he may need to wear suits, or particular types of clothing, at certain times, but will still be able to wear jogging bottoms when he's not at work or a formal event. And as an adult, he'll naturally have developed coping mechanisms as well as a mature understanding of which textures he can't handle, and will have time to source his own suitable clothing.
As an adult, I can assure you that no amount of forcing me to try food/drink that I couldn't consume would actually encourage me to do so. I'm 30 and still haven't had a cup of water in my life, despite various times making myself very ill when there weren't alternatives. I would work on a balanced diet as best you can. Again, as he grows he may open up his own eating habits again.
He's around the age where autistic traits can begin to develop a lot more. Until I was 6 or 7 I was still relatively good at matching my peers in social settings, and coping with certain texture and foods, but after this age things quickly progressed. I found that this became progressively worse from then through the teenage years and into early adulthood, then improved.
You're right that some issues are bigger. He does need to go out, and be a part of family life, but I think it's important to balance this with his needs. When you go out, scout out the quiet places that he will be able to hide away. If it all becomes too much, lead him to one of these places for some time to calm down. I tend to look for seats in quiet and sheltered areas, or even corners of rooms that people don't tend to go in. Alternatively I've been known at a push to avoid meltdowns by locking myself in toilet cubicles or going into changing rooms and pretending to try on clothes.
At the moment, you say that he goes from nothing to meltdown before you can react. This isn't likely to be the case. It will probably have been building up for some time, but you're not psychic and he's not going to tell you - even if (and that's a big if) he can identify the build up himself. Over time you may learn to recognise his triggers and things that will be difficult for him. They're not always what you expect, but if you can stay attentive you may be able to give him time to calm down before he reaches a full meltdown. By 'not always what you expect', I'll give you a recent example of my own. I was going out with my husband and daughter. I got into the car. My neighbour came over to chat to us briefly, which I hadn't been expecting. I managed this without any outward sign of how upsetting this change was for me. We went out, did a few other things, and then I had a meltdown that seemed to come out of the blue. It wasn't. It had been building up since my neighbour spoke to me and caused a change in how I expected the morning to go, but nobody else would have known that. As an adult, I can express that. It's less likely that your son would be able to identify a trigger, especially one that took place hours ago. So, your job might be to be incredibly attentive to every moment and to learn what might cause issues, which is a very difficult task.
Thank you so much for your reply. I actually read it this morning just before I left for work and it made me cry a little - I’ve been feeling very lost, not knowing if what we’re doing is helping or not, and hearing from someone who gets it that we’re doing ok really helped. Im pretty sure he doesn’t know the full story, but he knows something is up, as he has been asked to complete questionaires and he knows I talk to his teacher regularly and that we’re working on ways to help him manage the things he finds difficult. Perhaps that’s enough that he feels able to relax and really be his true self. He didn’t gel with his teacher last year, and he got a label as a disruptive troublemaker, which made things really difficult for him at school, he was so distressed, feeling like he was letting everyone down, but we know now he just couldn’t help it. Although his issues seem to be increasing now, it does seem he’s dealing with it better and is less distressed by it. I feel guilty that we didn’t see it sooner, and actually we let him down last year, but I’m more optimistic about what the future holds for him.
Thank you, I have been looking at some of those links already, my son’s school have started the process of referring him for an assessment, but have said it’s likely the process will be lengthy. His teacher and SENCO are fairly convinced he will be diagnosed eventually, but it’s good to find info and advice on how to help him in the mean time