I started to write about autism and what I’d do if I had an autistic child. Then I stopped, because unfortunately, the waiting lists are such that the most likely scenario is that an autism diagnosis comes after a substantial period of waiting and trying out things that might help in the interim period. I will write about autism separately, but I think the more logical place to start is by thinking about what I would do if I had a child and I believed ‘something’ wasn’t right, but wasn’t sure what it was.
I wrote a bit and in the process of writing realised that the topic is too complex for one piece of writing and that I’d need to divide this by age of the child at the time you first identify problems. I’m going to start by writing about the youngest children. I’m not specifically writing here about children who were admitted to NICU as newborns where you’ve known about their difficulties since birth or soon afterwards. I’m also specifically thinking about the context where you’re worried about a small child’s ongoing development, rather than the sort of problem where you’d be seeking speedy medical help. I’m also not writing here about a situation where you feel at breaking point or unable to cope.
With children under the age of approximately three, my initial focus would be searching for a medical diagnosis. For some of these children once a diagnosis is made and treatment is given, they can ‘catch up’ on parts of development where they are ‘behind schedule’. For others, when a difficulty presents this young, it’s likely to be quite a significant one warranting a medical diagnosis or at least a thorough exploration to see if there is one.
I think it’s important to remember in these circumstances to keep an open mind; you might suspect autism, but other conditions can present in similar ways to autism or can be present at the same time (ie. some deaf children can have poor social skills, some children who experienced abuse with their birth parents may have a complex presentation including autism, other developmental problems arising from neglect and attachment difficulties). Not everything is autism and is important that developmental language disorders, for example, aren’t missed. It’s also important to remember children are individuals who develop at different rates and to not over react when a baby or toddler is a bit slower than expected with the developmental milestones. So keep an open mind and don’t narrow your focus too quickly.
Secondly, you can easily read online about missed diagnoses because medics over apply the concept of “if you hear hooves think horses and not zebras”. You might well be the person with a child who has a rare condition, but you should still start by thinking about the most common ones. Go looking for zebras once you’re sure there aren’t any horses.
At this inital stage, there’s a choice to be made between observing and gathering evidence and trying to put in place things you can to improve the issue yourself and leave structured evidence gathering until you’ve tried out some other things first and found they haven’t helped. Alternatively, you might try to do them both together.
It’s difficult to decide in the abstract which option will be best. My instinct is if there is something that is a pressing issue, that’s upsetting people or causing people to sleep badly and so on, it’s worth having a go at addressing it first, but to set yourself a time limit. Once your child has been seen by a GP, the chances are they’re going to be on a waiting list that could be a variable amount of time. It’s unlikely the first person they see is going to be able to give them an immediate diagnosis. This means that you will have time after you’ve started the process with the NHS to keep trying things yourself and at that same time that whether or not you want more time to experiment with solutions, you will need to find ways to manage until such time as the medical processes catch up with you.
Evidence gathering
Keep a diary, note how your child’s presentation is different in different places (your home / a relative’s home / a supermarket / a park) and at different times – how are they different after you’ve collected them from nursery. If there are meltdowns or behavioural incidents (or seizures / other events that appear to be medical) take videos and photos. Work out an approach for evidence gathering that fits with the time you have available – you might find, with an older child that more detailed notes for one week out of each month gives you enough data. You aren’t necessarily going to share the evidence you’ve gathered in its raw form with anybody. Its use is, at least initially, so you can say, confidently “3 days out of 5 when I collect them from nursery they are exhausted, tearful and don’t want to do anything” or “out of six occasions when we’ve been to Lidl, they’ve had a meltdown in the shop or shortly after we’ve left on five of them”. If you can achieve this level of detail, it will help you communicate your child’s needs accurately to your GP and ideally displace any suggestion that you are an “over anxious” parent. For this reason, a short period of evidence gathering is likely to be beneficial in nearly all cases.
Aim for as much objectivity as you can in record keeping – don’t look at a previous record before writing the current one to avoid influencing yourself. If there are other adults in your household or who regularly care for your child ask them to help with record keeping too, to see what picture emerges. You might find one problem consistently with one adult or no particular pattern.
Video evidence of peculiar behaviour is worth taking so that it can be shared with medical and / or educational professionals in the future and gives you a baseline. You might catch seizures or other physical medical problems as well as difficulties with language. Absence seizures can be very disruptive educationally, so it’s worth making some effort to catch that sort of thing on camera.
From the perspective of checking your child isn’t in pain they can’t communicate about, regular visits to the dentist are a good thing and ideally should be started at a less stressful time so that you try to avoid your child becoming scared of dentists.
It’s nearly always worth taking a child to see an optician so that any visual problem can be found, because they’re often simple fixes with glasses and / or contact lenses.
If your child attends a nursery or goes to a childminder sharing your concerns with them and seeing if they match what’s happening with them is important. To some extent it doesn’t matter if they do as children presenting in different ways in different settings can itself be evidence of an unmet need. But you want to know.
Things to try
My focus would be on what was most distressing to my child or what was hindering my effectiveness, so problems with food, sleep and communication would be the first places I’d look.
I’d have a low threshold for finding an HCPC registered dietician to help me if I had a child who wasn’t eating or was only eating a limited range of food and couldn’t get a fast NHS referral. A lot of published information (both online and in print) about nutrition is nonsense and I’d want to try to find somebody with an understanding of the science so that I could avoid trawling a lot of useless content to identify the useful nuggets. I would be avoiding taking nutrition advice from anybody other than an HCPC registered dietician. Children who aren’t getting a wide enough range of foods over the longer term may become deficient in particular nutrients. My aim in seeking advice would be to help my child broadly eat enough nutritious food so that they have enough energy to grow and play and to ensure meal times aren’t stressful.
If there’s a small child who is awake when they ought to be asleep overnight they won’t have got their proper allocation of sleep for the day and nor will the adults. Sleepy people are very often grumpy and less patient with each other. My aim would be improving the total amount of sleep everyone gets and I might well seek advice from somebody working in this area. This isn’t a regulated area, so finding a suitable adviser may involve a bit of guess work and seeking personal recommendations.
My next focus would be speech and language therapy, because a child who cannot communicate is likely to become frustrated and sad. If we can improve the communication, that is likely to make everything a bit easier to manage. There’s a window of ‘language learning’ time for young children that you don’t want to miss, if you avoid it – you will hear it said that children who aren’t talking by the time they’re five probably won’t be able to speak. Improving the communication might involve teaching the adults around the child more skills around how to communicate or introducing some adapative and augmentative communication equipment rather than necessarily lots of direct work with the child. So it is worth looking at a one off speech and language therapy assessment independently, even if you aren’t in a position to fund ongoing therapy privately.
Generally young children with conditions like cerebal palsy are identified by the NHS and some support is put in place without families having to argue too much at the initial stages. If I had a child with some kind of milder physical disability that hadn’t been identified early, I would look towards an independent physiotherapist, for a number of reasons. Firstly, I might have spotted something that can quickly be improved with a short course of therapy rather than something life long and that’s worth trying. Secondly, it’s less common to find physiotherapy on EHCPs. It’s entirely possible, for the right child, for physiotherapy to be in Section F of their plan, but compared with speech and language and occupational therapy, it’s less likely to be there. Thirdly, a physiotherapist is likely to be able to give me advice about activities that will support my child’s development that we can work out how to incorporate into our week. Very often physiotherapy for a small child is meant to be supplemented with activities like swimming, gymnastics, trampolining and so on and some professional advice on which activities to pick at an early stage would help.
Occupational Therapy is probably next on my list where I have a child who needs to be taught different ways of doing things or where we need help with equipment or where there are obvious difficulties with sensory processing.
Even though there is uncertainty about the child’s underlying diagnosis at this stage, all three areas – SALT, OT, Physio should be able to provide recommendations to support in the interim.
What to do next
Evaluate the position and let the evidence lead you. You might discover that what you thought was a problem isn’t actually one, or have worked out a way to improve their sleep which has improved their behaviour during the day. That’s a success and doesn’t mean you were wrong to have looked at the problem in detail. Put the evidence to one side and carry on. You may find the same or a different problem emerges when your child is older and now you have the ability to talk about it historically.
If the evidence leads you to the conclusion that there’s a difficulty you need further help identifying and/or addressing, now is a time to see a GP, because the evidence you have will enable you to explain what you’re worried about in detail. They should be able to refer your child to a child development centre / paediatrician who can investigate further. They may also be able to refer to speech and language therapy / occupational therapy / physiotherapy, but that will depend on local arrangements ie. referrals there may usually be made from the child development centre. In some areas a Health Visitor may also be a useful first contact and able to make some referrals.
Medical and educational processes for obtaining support can operate in parallel. Often a medical diagnosis can help guide the educational support needed, but it is tautalogous – no, you don’t need a medical diagnosis to obtain an EHCP – you need evidence of what they need to learn that’s additional to or different from what other children of the same age need, but very often the way you work out what they need in order to learn starts from a diagnosis.
In that waiting period I would continue to try to keep recording evidence, in a sustainable way for me, so that I could talk to medics and other experts about what’s going on for my child in an up to date way when we’re eventually seen.
I would be keeping the evidence in such a way as to support a claim for Disability Living Allowance, if the difficulties last for three months and are expected to last for at least another six months.
I would be looking at the “Things to try” section above and considering if any of our difficulties are sufficiently bad or waiting lists are particularly long that I want to try one or some of them.
It’d also be useful at this point, if you can, to ask relatives about any known conditions in the family to help you answer the family history questions in due course.
One of the tricky things about this period is that there is a huge amount of uncertainty that isn’t going to go away until your child has been seen by somebody. It’s possible you’ll see a specialist and they’ll say ‘nothing to worry about’ and you’ll be relieved (or alternatively, upset because you can see something is wrong). It’s possible you have a diagnosis in mind and you’re right. It’s possible you have a diagnosis in mind and you’re wrong. And there are many other possible permutations. Think about how best to look after yourself in the uncertainty. This might involve finding a distraction or an enjoyable activity for yourself, or it might mean finding yourself a counsellor / therapist. It might be that some of the suggestions below around finding other families in similar positions helps with the uncertainty.
Now is a good time to do some research into:
– what local SEN groups exist
-any local activities geared to disabled children (this is one place where your LA’s ‘local offer’ might be useful – they often identify specialist sports and other activities for disabled children). Your child might be too young for most at this stage, but you have the opportunity to investigate and see which ones you like.
With both of these you are looking for activities that might suit your child and social connections for you with families in similar situations. You might end up not getting on with some of the people you meet – that’s fine, keep looking and try different groups and activities till you find some that work for you. You don’t need to avoid mainstream activities but you may find more in common with other families of disabled children – I think the classic example is that parents of children with poor communication skills may find it very hard to tolerate parents of children with reasonable communication skills complaining about their children saying ‘no’ all the time. The realities are different for families in both situations.
It’s also a good time to do some research into:
– charities and other organisations specialising in the conditions you suspect your child might have – look both at the national ones and at the smaller more regional or local ones.
– charities that help families where there isn’t a specific diagnosis and charities that generally help families with disabled children.
You’re looking to the charities for information, which may be more up to date and comprehensive than that provided by the NHS and perhaps for diagnosis specific support groups / talks, so this is worth doing, even if you’re not looking for grants and you don’t need another regular commitment in your diary.
If there’s a very long waiting list to see the relevant NHS clinic, I’d make enquiries about seeing someone privately, taking care to ensure that the private service worked with very young children and could replicate the multi-disciplinary approach you expect to see in the NHS. At this age, I’d be unlikely to seek a private medical diagnosis because a one off diagnosis is unlikely to lead to me being better able to manage the situation in and of itself and it is likely to be better to wait for the NHS and / or to wait until involving an independent Educational Psychologist makes sense.