You may be a parent who is noticing behaviours in your child that has made you question if there is something else going on. Don’t panic! And remember, that you are not alone and there are options and processes to support you.
Your child may have difficulty concentrating, have a need to constantly fidget, avoid eye contact or display hypersensitivity to certain sounds or smells… Any of this sound familiar? It may be that your child has a Special Educational Need or Disability (commonly known as SEND in England). The terminology in Wales is slightly different – Additional Learning Needs (ALN). It can be difficult to recognise SEND in many children as there are rarely any physical symptoms and SEND will present differently in each child. SEND also presents on a spectrum, meaning some children will be affected more than others.
What is SEND?
A child is thought to have SEND if he or she:
Has greater difficulty with educational learning compared to others their same age.
They require special educational provision to be able to access educational material.
Some examples of SEND include Social, Emotional and Mental Health (SEMH) / behavioural challenges, Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). These are only a few examples and there are many more types of SEND. ASD and ADHD, however, dominate the SEND space and the majority of children awaiting assessment, so we will focus on these in this article to provide practical tips and signposting.
If you want more information on ADHD, check out my recent blog post: ADHD or a mental health disorder... What’s the deal? (learningwithoutlimits.co.uk)
Want to know the difference between ADHD and Autism and how to recognise signs? Check out this video! https://youtu.be/xQc5Feyl2GE
It is important to remember, even if you think your child has additional needs, a formal diagnosis from a trained professional is necessary. No one knows your child better than you do, but don’t make the mistake of diagnosing yourself as there may be other barriers you are unaware of. Hopefully this blog can shed some light about what you can do if you find yourself in this situation.
This infographic is a sort of road map I have sketched out to illustrate through your journey to get support for your child. We will delve into each stage further, as the article progresses.
Where to start?
Before you dive into the prospect of a learning difficulty, it is important to rule out that a physical disability is not the cause - it is key to explore many avenues. A common symptom for Autism, for instance, is not responding to their name being called and avoiding eye contact. Before going down the route for a referral, it would be a good idea to test your child’s eyesight and hearing. If all is well in this area, you can at least know you have crossed off this option. This will benefit you later in the line if you go to your GP.
If you have concerns, a good place to start is by talking to your child’s teacher or another adult who your child is frequently under supervision from. Ask them if they have noticed anything about your child’s learning behaviour, or how they interact with their classmates. Perhaps ask if they can keep a logbook for you to collect each day at home time, to communicate to you how your child has interacted with others each day.
If your school has a Special Educational Needs Co-Ordinator (SENCO), you could also ask for an appointment. They may be able to offer an opinion about your child and give suggestions for support while you take your search further. Some SENCOs will also be able to put your child forward for an assessment, following observations and information gathering from other adults around your child.
Speaking to your GP or other Health Professional
After speaking with your school, the next step is to get an appointment with your local GP. Your GP will not be able to give a formal diagnosis, but you can unload your concerns and your GP will be able to refer you to a specialist for an assessment if necessary.
It may be worthwhile making some notes of your concerns before going to the GP so you can give all the information required for a referral. Make sure to also take any information from your teachers, even if it is just a written-up version of your conversation with them.
They may ask you:
About your child’s symptoms and when they started
In what context the symptoms occur (in public, at home, school, a certain time of day)
If/ how the symptoms affect your child’s day-to-day life
Whether there have been any significant changes in your child’s life (loss of a family member, divorce)
About any other existing medical conditions
About any family history of learning difficulties (some forms of SEND run in families)
Unfortunately, it is not guaranteed you will be referred for assessment. Your health professional may believe there are other underlying causes and decide not to refer you. This can be upsetting and frustrating, particularly if you feel confident SEND is the cause.
In this instance, you may be expected to do some ‘watchful waiting’ to see if the symptoms improve or not. It could be worth creating a behaviour log to see when the behaviours occur and in what form and severity, you may notice a pattern. This will be beneficial not only for a referral but also your own use as you can implement support techniques around these times to help manage the situation. Once you have this, speak to someone else, such as another GP – this is called getting a ‘second opinion’. You may find they see something the first professional did not.
Waiting Times
Unfortunately, assessment referrals do not happen overnight and waiting periods are to be expected. The most recent publication from the NHS states at least a 13 week wait for an ASD referral[1]. The reality for many is
a wait lasting many months, however, their figures are slowly improving. According to ADHD UK, the wait time for an ADHD diagnosis is roughly 6-18 months[2].
While a diagnosis can open doors for support in school and other areas, it is not a magic wand in itself. Even while you await a potential assessment, there are some great support networks you can tap into. These are likely to be filled with endless tips and tricks of how to support your child and are a truly invaluable resource for parents. But, like we said earlier, no one knows your child better than you, so do what you believe is right for your child and what works for your family. Just because something works for one child does not mean it works for every child.
They may also suggest joining a parent education programme. Try not to take this as an insult or a suggestion you are a bad parent. Its aim is to teach you methods you can use to support your child and give you more understanding of their needs. This will all be very new to you and so it may be beneficial to attend a class so you can better understand your child. This can also be a great way to meet other parents in the same boat who you can share your struggles with. It can be relieving knowing other people are going through the same thing.
The long-awaited assessment...
Assessments will differ depending on the suspected learning difficulty, so let’s take a look at an assessment for Autism and ADHD.
ASD Assessment
- The assessment will consist of an interview with you as the parent/ carer.
- A language examination to determine communication level.
- A behavioural observation which will either be play based (young children) or conversation based (older children).
Private psychiatrists may carry out different assessments, but most will follow a format similar to the one above.
ADHD Assessment
There is no hard and fast way to diagnose ADHD, but specialists can make an accurate diagnosis based on findings from an assessment. The assessment for ADHD includes: a physical examination, interviews with the child, and reports from significant adults in the child’s life (this is where teacher reports or a communication log will be handy).
For a child to be diagnosed with ADHD, they must meet strict criteria of 6 or more symptoms of inattentiveness, or alternatively, 6 or more symptoms of hyperactivity. They also must:
- Have been displaying symptoms for a continuous 6-month period.
- Display symptoms before 12 years old.
- Display symptoms in at least 2 separate contexts (school and home). This is to rule out if the behaviour is caused by something in one of these settings.
- Be affected in their day-to-day life by these behaviours, which makes social and educational activities difficult.
Following the Assessment
A detailed report will be given detailing the results found from the assessment and if an educational need is present, how this presents in your child. It will also include recommendations for management and support, or any further assessment if required.
Going Private
We are incredibly fortunate in the UK to have our NHS. If you can wait, absolutely try going through the NHS for your assessment to save some money. However, if you decide you do not want to go through the NHS, there are many private practices that can conduct an assessment for you.
It is likely you won’t have much of a wait, if at all, to get an assessment. However, you will have to pay for this privilege. Depending on where you are in the UK, an ASD or ADHD assessment can range anywhere between £350 to £1500+ so there is a wide spectrum. The report you receive may go into more depth, but this will depend on the company conducting the assessment.
If you decide private is the way forward for you, check out some links to private assessment clinics at the bottom of this blog.
Moving Forward – Getting the diagnosis
Receiving a diagnosis of SEN in your child may take some time to digest. You may experience relief, finally knowing for certain what was causing your child’s behaviours. Or you may experience shock and struggle, wondering where to go next.
It is important to remember that help is available to those who want it. A quick google around your local area will tell you if there are any support groups available. If not, the internet and social media is full of wonderful communities of parents in the same situation, all supporting one another.
Things may be hard soon after a diagnosis. Remember that things will improve and having a diagnosis can open many doors for support academically and occupationally when your child gets to that age. They are still the same child, just now they have a superpower! Their superpower is they see the world differently to everyone else; this does not make it wrong, only unique.
You can also gain support from national charities, for instance the National Autistic Society or The ADHD Foundation. These charities provide ongoing support and services for people and families with SEND. Remember, you can still access all these support groups before you even have a diagnosis, or if you go through assessment and come out without one. Support services are available to anyone that needs them.
A Final Thought
Going through a diagnosis can be a daunting, uncertain process. You may wonder how this will affect your child’s life and their friendships. While your child may need extra support in some areas of their life, don’t forget all the positive things that also come with SEND:
Creativity: As we said earlier, children with SEND see the world differently to others. This can also mean they see things others don’t see. They may be a fantastic problem solver, or a creative artist.
Attention to detail: Particularly in children with ASD, they have a rare skill of thoroughness and accuracy which non-Autistic people do not possess. This can be of great benefit to them in their job search as it is a great quality for employers.
Curiosity and expertise: They may develop a deep interest in a topic, with their curiosity going so deep they become an expert in the field. There's no way of knowing for sure, but many believe Albert Einstein would qualify as having ASD today due to his intense knowledge and interest in maths and science. Who knows, your child’s expertise in a certain topic may well shape their entire career and future! More so, they will love what they do!
As always, if you would like any support or have any suggestions for future articles that you may be interested in, please do drop me a message and feel free to subscribe to be the first to read our posts.
Thanks for reading and supporting :)
Lucy x
Links for Private Assessment Clinics:
http://www.setrust.hscni.net (Belfast)
http://www.theassessmentteam.co.uk (St Albans)
Autism Diagnosis & Tests | Support | The Autism Service (Numerous locations across England and Wales)
References: