Advice on seeking a diagnosis for Autism, and choosing a school

Next month, Stanley will turn 3. By the end of this year, we will (somehow!) have made a decision on what school we would like him to go to.

Stanley doesn’t have an “official” diagnosis, we have so far only seen a private psychologist. We are aware of the struggles of getting a diagnosis, the time it takes, and the likelihood that they won’t see Stanley – due to his age, and how well we generally cope (most of the time, of course!). As a family, we do all we can to work around Stanley’s routines and needs, and so there has been no need for us to seek an official diagnosis. I think we are reluctant to seek it due to a fear of him receiving a label, becoming the label, and no longer being Stanley. I’m scared that people won’t see beyond it, and that they’ll make assumptions based on it. Society often needs a label in order to understand, but for us this is irrelevant – we simply want to help Stanley as best we can. If this means getting a label, we will fight for as long, and as hard, as we need. 

As we start to think about schools, I start to panic. What if he needs extra support? Do we need a label for him to get better support and understanding at school? I know of battles that people have been through, and I’m scared that we’ll have to face this fight. I don’t want him to have to struggle at school before we can get help – for us to then have to battle to get it – when help could be sorted in advance to prevent this. But, I don’t think this is possible. From what I am told, they are unlikely to touch Stanley – one of the reasons being that two reports are needed – one from school – before anyone will see him. It is my fears of how Stanley will cope with school that leads me to wonder about seeking an official diagnosis. I’m scared that he won’t cope, and that he’ll either be labelled naughty, or that he’ll get missed. So I’m left wondering, do I try and start the battle now, a battle that I am unlikely to win, before school… or do I wait and see how he copes? Because there is of course a chance that he could be more than ok at school without the need for extra support, but we really don’t know… and won’t know until he makes the transition.

This of course also leads me to wonder what type of school will be best for Stanley. How are we supposed to know what’s best? What do we look for? What questions do we ask? Do we mention Autism despite no official diagnosis? Would he thrive more in a small school (<50 in whole school)? Or, would the jump to secondary then be too big to cope with (when this is already going to be a big enough jump)? Would he be better in a large school, with a wider range of children with differing needs and abilities… would this help him socially, or would this be too overwhelming? Do we ask about discipline? Homework? Do we ask how flexible they are to children’s individual needs? There are so many questions to ask. Plus, I have no idea how much to tell them. What do I prioritise? What do I look for in a good school? How will I know which one is best for Stanley? What if we pick the wrong one? What if we choose a school and he doesn’t get in? I want a school that will embrace individuality. A school that is flexible. A school that will work with Stanley, and not try to change him in any way. It’s hard when I don’t know exactly how he’s going to cope and what support he’s likely to need. There is so much to think about, and I wonder at times if I am even overthinking this all too much!

Awareness, and acceptance, of Autism

Stanley. By the look on his face here, you would never guess what sort of a day he’s had. It has been so tough, and I am sure that we are both more than ready for it to be over. We had a wonderful morning with friends, but it soon went downhill after a couple of hours. Stanley had a meltdown, and he has since been on edge all afternoon. I must say, we couldn’t have been in any nicer, more understanding, company this morning. It is so refreshing to speak to someone who not only listens, but understands Stanley. Someone who believes us. Someone who can see that Stanley is struggling to cope in certain situations, and someone that goes out of their way to help. No judgement. Someone that is not only aware of Autism, but is accepting, and understanding. Speaking to people like this make me realise that I am not imagining these things with Stanley (because other people really make me feel like I am at times). Other people judge, and it’s often because they have known a child with Autism, and Stanley isn’t like that one child they have met. What most people don’t realise is that one child with Autism is simply that… one child with Autism. The spectrum is so wide, and so varied, that no two children with Autism are the same… and because you have met one, you haven’t met them all. Meeting one child, and understanding one child, does not mean that you therefore understand what all children are like. It is the same with Autism. People won’t accept, and understand, unless they really take the time to be open, to listen, and to do all they can to at least try and understand. Whilst most people are probably aware of Autism these days, I am not so sure that they are understanding, or accepting… and especially when meeting someone who doesn’t fit the stereotypical, media representation, of what Autism “is”.
I think I need some time tonight to reflect on today, and to reassess what we are doing, and what more we can do to try and help this little man cope.

A question for autism parents

Sometimes, if something isn’t “quite right” (i.e., in the way that Stanley is familiar with), it looks as though he is in physical pain. For example, if he wants someone to do something in a particular order, and they don’t do it in that way (because they don’t know), then he will back away from them, with his arms up as though he is shielding himself. He looks like he is in pain, he becomes distressed, and will sometimes be able to say “not that way” or “not like that”.

Even though he knows how he wants something to be, he isn’t always able to communicate this to us, and this can sometimes lead to a meltdown. This usually becomes particularly tricky when it involves people that aren’t familiar with his routine, or his way of doing something. Though in saying that, we still have plenty of moments as parents when we just can’t figure out what it is that he wants. It’s tough because he is very articulate for his age, his vocabulary amazes us at times, but when we are in situations like this, he simply cannot communicate what he wants.

So, more than anything, I was wondering about the experience of pain – is this possible? Could he actually be experiencing physical pain from these situations? And, do you have any tips on dealing with this, and finding ways to help Stanley cope? I feel like we try everything sometimes, and nothing seems to help. Sometimes, it is like the flick of a switch, and he will instantly calm down… but not in response to anything we have done. Usually, we have no idea what it is that changes, as we don’t notice anything externally, and therefore can’t use it to help in future situations. I know sensory difficulties can cause physical pain for some, but to me this doesn’t appear to be a sensory issue… it seems more related to routine, and a need for things to be done in a particular / familiar way.

Any thoughts welcome πŸ’›

Married for 44 years, and feeling super Mum guiltΒ 

Mum & Dad ❀ married today for 44 years, as well as being my mums birthday. Whilst it has been a lovely day spent with family, it hasn't been such a lovely day for the little man. He has done so much today and it has been a real struggle for him, especially adding tiredness to the equation. He does so well, and then its days like today that leave me feeling guilty. Guilty because I know we should be consistent. Guilty because I know we need to stick to his routines as much as possible. I should be able to make sure he has a nap during the day, surely? I shouldn't expect him to be able to cope with going out. I should be able to provide him with the quiet environment that I know he likes. I shouldn't force him to work around everybody else. I should be stronger and focus on Stanley's needs. I know what he needs, but sometimes it's hard. Especially right now. Being #37weekspregnant, I can't do all of the things I usually do for him. These past two days have been tough – I've been getting pains, and have barely managed to do anything – I think this little lady is ready to make an appearance! To end the day? I'm left with super mummy guilt, because out of the 101 things we took with us to nana's today, the one thing I forget to bring home is the one teddy that Stanley wants… #mumguilt #guiltymom #parenting #toddlerlife #autismawareness #asd #autismjourney #autismmum #autismparent #autistic #autistictoddler #routines #autismjourney #autismlife #ilovesomeonewithautism #phddmum #phdmama #phdmom #phdproblems #anniversary #weddinganniversary #birthday #pregnancy #pregnancylife #pregnancyproblems #pregnancyjourney

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Making progress on sleep & routines

Last night Stanley slept in his own bed, without us hearing a peep from him, until 6am! I woke up at 03:15, and my first thought? Panic! Is he ok?! Following that, I was actually surprised that I had managed to sleep until 03:15 without waking for my usual hourly toilet breaks that seem to be happening every night at the minute (#35weekspregnant)! I am not sure if last night was a one off, or the start of our new routine starting to show promise. There have been a lot of changes for Stanley over the last few months, including a new house, which haven't helped with his sleeping. But, over the last few weeks we have gone from crying / hiding / running to our bed in the early hours of the morning, to just shouting "mummy" (and then immediately returning to sleep as soon as he sees me make an appearance – perhaps for reassurance?), and now hopefully, we're beginning to see the start of a more settled nights sleep for him. There have definitely been improvements, I'm just hoping the arrival of little lady doesn't upset things once again! #toddlersofinstagram #sleepingtoddler #autistictoddler #toddlerlife #autismjourney #autismlife #routine #autismroutines #autismmum #phdmum #phdparent #phdlife

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The importance of routines

This face sums up my feelings towards the weekend! It has been the first weekend in a long time that we haven't made any plans, the only plan we had was that we would do absolutely nothing. Big mistake. We have certainly learned the hard way the importance of routines this weekend. It's moments like this when we see the glimpse of his autism, whereas most of the time it's somewhere sitting in the back of our minds. We usually get on with things, the way Stanley likes, without thinking most of the time. But weekends like this have taught us that we really need to keep this at the front. There is no questioning it (though others certainly like to disagree!). I worry that when the little lady arrives we are going to find it much harder (for example to find the time) to stick to all of Stanley's routines and ways of doing things. We've been desperately trying to prepare him as much as possible for when little one is here, and make some of the changes sooner rather than later – hopefully some of these pay off! #phdmum #phdparent #phdlife #autismjourney #routine #autismroutines #autismmum #autismlife #autistictoddler #toddlerlife

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What happened when Nana chose to walk in front

Yesterday, Stanley had a meltdown. Nana walkedΒ in front of Stanley, rather than behind (or to the side!). This may seem trivial, but when he’s tired, little things like this become amplified, and his routine becomes even more important. Safe to say that shortly after, he fell asleep in my arms (a rare and treasured occurrence now he’s growing up!), and had a much needed 2-hour nap!