Your appointment with the neurodevelopmental pathway

Transcript

Hello, and welcome to our session about your appointments with the neurodevelopmental pathway. I’m Sarah Hanlon, one of the neurodevelopmental practitioners.

And I’m Hannah Sprout, and I’m a care navigator for the neurodevelopmental pathway team.

So we are gonna talk about the pathway. We’re gonna talk about what we mean by the neurodevelopmental pathway, and we’re gonna talk about your appointments and what to expect while you’re on the pathway, as well as a little bit about what to do while you are on the pathway. When we talk about neurodevelopmental, we’re thinking about autism or autism spectrum disorder, sometimes known as ASD. And we’re also thinking about attention deficit hyperactivity disorder, which is commonly known as ADHD.

Okay. First of all, we’re gonna talk about the neurodevelopmental assessment. We call it a pathway because there’s different parts to it, and we know there are gonna be some waiting between the different parts of the pathway, the appointments. And the important thing to know is that the team will be in touch when those appointments are coming up for your child or young person. If you’re unsure at any point, we have a single point of access, which is a telephone line you can contact and ask questions if you need to, but we’ll make sure as much information is in your written letters as possible. So do check what you’ve got at home.

First step of the pathway is the referral. Your child will have been referred for a neurodevelopmental assessment, and you and others working with your child, so potentially their school, would have put all the information they can into that referral document. What will happen is then that goes to the triage team.

So as part of triage process, the referral information will be read, and it will be considered by professionals within the neurodevelopmental pathway.

And what we’ll do is we will make sure the assessment your child receives matches what their needs are, how they’re presenting at home, how they’re presenting at school. And what will happen is we’ll consider whether they need assessment considering autism, an assessment considering ADHD, or an assessment considering both. And what we’ll do after that is we will write to you and tell you what’s going to be happening. Now one thing about the neurodevelopmental pathway is it’s flexible. So if your child needs change while they’re on the pathway or as part of their appointments, if we decide they need further assessments in any areas, we can make that change. So if there are new needs that are coming up at school, say, for example, following a parent’s evening, please do get in touch with us so we can consider all the information.

So the process is slightly different for autism and ADHD. So we’re just gonna take a moment to take time and talk about the differences. So first of all, if we are doing an assessment considering autism, there’s a stage where we call it information collection. You’ll have a initial telephone consultation, And the idea of this phone call is to speak to you, collect some more information about your child, your family as well, check that you sort of are understanding sort of what the next stage will be of assessment, and we can answer any questions.

Within that initial telephone consultation, we’ll also be doing what we call a developmental history consultation with you. So we’ll be talking about how your child was as a baby, how your child was when they were in preschool or nursery before they started school, and what you noticed about things like how they interacted with other people and what they liked playing with as any as well as any other kind of behaviors you might have noticed when they were younger. Don’t worry about preparing too much for this call. We’ve got questions. We will ask and prompt you as we go along. And if you’re unsure at all, that is absolutely fine. We can talk it through as part of that telephone consultation.

Another part of the assessment, and this might happen separately, so towards the end of the process, is we will be sending you questionnaires. So these might be sent via the post or online via email to gather some more information about your child.

We are very aware that where it comes to kind of waiting between appointments, things can change. And we really like to give you the opportunity to share any new information or any changes that have happened.

One of the things we like as well is to hear from you young person. So if if your young person is sort of age eleven or over and at secondary school age, we might be sending a questionnaire for them to complete.

You know, it’s absolutely fine for you to assist for things like writing or reading the questions if need be. And if it is a particular problem, please do get in touch with us at any point.

So one of the big bits of the autism assessment is what we call the observational assessment. So this is where one of the team will be meeting your child. And what we do is we make sure that that appointment matches what your child needs. So this means it might look slightly different to maybe other people you know on the pathway, even siblings within the same family. So brothers and sisters may have a slightly different appointment set up, and we just wanna make sure that we’ve got kind of the best assessment for your child.

So the options are it might be a face to face assessment. It might be in one of our clinic locations.

In some cases, we might come to school to do those as well.

And there are other options we can consider. So we can consider a virtual appointment. And some young people, if there’s kind of potentially additional health needs or we want to kind of check, we might do a medical assessment. One of the terms you might hear us using is what we call co occurring needs.

In some paperwork, you might also see it written as comorbid difficulties, but we we call it co co occurring difficulties, and that means other needs that might be presenting alongside some of the things that your child’s finding difficult. So we’re thinking without things like kind of language disorder, developmental delay, learning difficulties, and we want to make sure as part of our assessment, we gather as much information as possible. So the medical assessments are usually with our community paediatricians. And one of the things we would advise you is when we send your appointment letters, always check the location of the appointment because sometimes you might find they’re in different locations across our area. But we will send you a letter, and then you might also get one of our telephone consultations, a call to just check you’re happy with all the details.

So with regard to autism, the final stage is the outcome. So what happens is when we’ve gathered all the information we need, we discuss the information at one of our multidisciplinary panel meetings where all the information is considered, and we look at the criteria for autism.

When we say multidisciplinary panels, this is a group of professionals from different backgrounds. So myself, I’m a speech language therapist. And then usually on panel, we’ve got clinical psychologists or consultant pediatricians who will also use their kind of clinical expertise to understand the information that we have from you, your child, the school, and the observational assessment. One of the questions we get asked a lot from parents is what do we do if the child is coping really well at school?

You might have heard the term masking. So we know some young people, they can kind of cope in certain situations, particularly if they enjoy going to school. That’s perfectly possible. And we talk a little bit about it being a jigsaw puzzle.

We pull together all the information and just see if it fits the diagnostic criteria. So I think if you’ve got any concerns at all about kind of differences between home and school, we’d say don’t worry at all. You know, that’s completely normal as part of this process. It’s very much understood that children do present differently in home and school.

But discuss any concerns you have with us, and we can be there to kinda answer your questions. One of the things that sometimes happens is we might have a panel appointment, and then we might come back to you with further questions.

So don’t worry about that at all. What we’ll do is we’ll let you know the outcome of panel. And what we’ve done as well is we put all the information that’s discussed as panel in a summary report, which you’ll receive at home with the outcome. And one of the things we very much want to make sure is that you’ve got some really clear signposting and guidance about what to do after that assessment regardless of the outcome.

So we’ll make sure you have some sort key websites and places to go to find more information to help meet your child’s needs. So one of the things you might hear us talk about is a post assessment meeting. These are virtual meetings that we can offer, particularly if your child has received a diagnosis and you want to find more about autism and local support. After everything’s completed, your child will be discharged from the assessment pathway.

Now I’m gonna talk a little bit about ADHD assessment and how this differs.

If your child’s been seen for both ADHD and autism assessment, sometimes these will run what we call simultaneously, so alongside each other. Sometimes they might occur one after the other just depending on kind of availability. But again, like I’ve mentioned, we will be in touch, and we will let you know when we’re ready for the next stage. So a big part of ADHD assessment like autism is information collection.

You’ll get some questionnaires either by post or email. But again, we’ll be on hand to kinda let you know what’s going to be happening and share that information with you.

What happens with the results questionnaires is they’ll be reviewed by one of our team, most likely the consultant pediatricians, to have a look at actually what’s gonna be the best next step for your young person. So there’s various options. It might be a medical assessment with a consultant pediatrician to sort of check your height, weight, blood pressure of your young person, or it might be that there’s further assessment, and we’ve got a few different options that we use. One of the outcomes at that point is, you know, if home and school and you’re a young person, you know, all the information indicates that ADHD possibly isn’t their presenting need. Your child might be discharged from the service, but, again, we’ll be in touch to let you know. Final stage, the outcome, is what we do is we consider all the information and we’ll share a copy of the report with you at the end.

With ADHD diagnosis, there’s a range of options. So there’s some things that you can also do before you find out the outcome. There are what we call behavioral strategies, which can make a huge difference if you do have ADHD or attention difficulties, and we’re gonna talk about those later in the presentation.

But also we are aware some young people might want to try ADHD medication, particularly if the symptoms and the attention and concentration difficulties are having a significant impact on education and schooling. So that’s something that is an option, and you can discuss that with the medical team.

Right. We’re on to the next section, and this is about how to prepare for your assessment and the appointments that you have with our team. So what we want you to know about the appointment is it’s really important that your child feels relaxed and comfortable. You can tell them as much as you want about the appointment and look at the information on our website as well. In these appointments, we want to get to know your child. There’ll be some opportunities to chat, answer questions, and also do interesting activities.

If your child’s younger, we might have some toys for them to play with.

So we like to keep our options open and see see what we sort of decide to do on the day. What we’ll do is we’ll tell you if you need to bring anything to the appointment. What we usually recommend is do you have something handy for the waiting room? There may be a wait for your appointment. So do bring an activity to do while you wait for the appointment to start, and then also maybe bring some refreshments like a bottle of water to keep handy.

One of the things we like to talk about with you at this point is consent.

It’s really important for us that your child understands why they’ve come to see us.

There’s differences for ages, so we fully appreciate that younger children, it may just be a case of explaining to them that they’re gonna meet someone who’s gonna try and get to know them a bit. Whereas older children, we do expect them to understand potentially a little bit about autism and ADHD, whichever is relevant before the appointment. And it’s really useful if you talk about it at home first. There’s some really good websites and videos you can share with your young person, and we’ll be referencing those later in this talk.

If your child doesn’t want a diagnosis or assessment, we really have to respect that. Sometimes it’s just not the right time, and we can have a discussion with you about what to do about that. We fully appreciate that a diagnosis, if that’s the outcome at the right time, can be really powerful for young young child, and it can be really helpful. But we also know that a diagnosis potentially at the wrong time when your child isn’t ready to maybe accept it can be potentially harmful and also confusing if they don’t realize that their brain works a little bit differently.

So this is something we’re happy to kinda discuss with you as much as possible, so do get in contact if you’ve got any questions.

There’s a few things about how we can help you. So it’s really important. We can provide access to interpreters, including British Sign Language. So do let us know if you need any interpreter. Interpreter. Also, we are trying as much as possible to make our information accessible and easy to read. If your child needs any visual supports like a photo or visual timetable, do let us know, and we’re trying to provide this where possible.

The other thing to mention is if your child’s unwell on the day of the appointment, please do let us know. We’ll be able to offer a new appointment when they’re feeling better.

We have a single point of access. So this is a phone number you can ring and you can speak to one of the team. The phone number’s at the top of appointment letters, and there you can tell us about any cancellations or any changes that are needed.

So do let us know if anything comes up at all.

So we’re gonna talk a little bit about while you are on the pathway and what to think about here. So we have mentioned at the beginning of this talk that it is a pathway. There will be waits between appointments, and it’s not a quick process.

One of the things parents ask us is how long the wait will be.

And truthfully, that’s one of those questions. We we can’t tell how long the wait will be. We just know there is a wait and it because it’s a specialist service, it might be quite considerable wait. What we do know is it’s really important that any needs your child has are supported while they’re on the pathway. Whereas, you know, we don’t want you to wait until the end of the assessment. So we know you know the child the best.

Sometimes we say that parents are the experts, and I know, you know, sometimes you feel that actually it’s really useful to talk to professionals around about your child, but we know you’re the one that kind of really understands them. You know what kind of upset them in the morning before school. You know what their difficulties are, what they find really, really challenging during the day. So think about their areas of need, but also think about their strengths, what they’re good at, what they enjoy, what their interests are.

And what we’d recommend is with the people that work with your child already, so whether that be professionals in school, really work together to support those areas of needs as well as working with their strengths. One of the things we say is autism and ADHD are dynamic differences. So what happens is you can have good days and bad days. Some days, you can have days where your child or young person, things are going really well.

They’re attending school. They don’t seem to have many needs, but it might be either later that week, later that year, or maybe at some point in the future, things shift and maybe they start to find things more difficult, particularly things like social challenges become more apparent or if they have more learning challenges. So for example, starting exams is a big one. One we one thing we do know is any support is based on what their needs are.

So do speak to the school, particularly if it is around exam adaptations, about what support can be put in place. And we know there’s different approaches that can work for different children. We talk about, you know, everyone who’s on the spectrum, is different. So it’s really important to work out what are the useful strategies, what supports them.

So the next thing we want to talk about is finding out about autism. So what you can do before your appointment if we’re considering autism is find out a little bit more about it. Find out where there may be common themes with your child.

It’s something you can maybe talk about with your child. You might find out when you start reading more about it that your child’s very different and maybe, you know, this isn’t the best fit for them.

There’s some really, really good resources. What we would recommend is trying to seek out resources that have been written by neurodivergent individuals. So that’s individuals who are autistic or have ADHD themselves.

They can provide a very kind of honest well explained sort of a version of what kind of autism and ADHD is. So we’ve got two recommendations here. First of all is amazing things happen.

There’s a there’s a whole suite of videos about different things. There’s there’s one’s about autism. There’s one’s about ADHD. There’s includes one about dyslexia as well. So those are kind of short animations that are really easy to show to your child, and they emphasize the point that actually, you know, everyone’s different, and it’s not something to be worried about.

Another really useful website is autism understood. So autism understood dot co dot u k. It’s been written by young people who are autistic for other young people to look at. It’s really easy to read, and also it has some information about co occurring needs such as ADHD.

Another resource, which is really good, is Rebecca Burgess is a young person or an adult now who’s autistic. We sometimes get lots of questions about where my child is on the spectrum or how severe is their autism.

And what we’d say is it’s really useful to look at your child’s profile. So there’s lots of different areas that can be a challenge if you’re autistic or even if you’ve got ADHD. And as I’ve mentioned, it can be dynamic. It can change over time. Like, you might have days where your child’s really good at communicating, and you might have days where they are much more shut down and they find it really, really difficult or different social scenarios. They might think find things more challenging. But it’s really useful to kind of think about it as a as a movable profile where they may have strengths and needs that alter depending on different factors, and they’re not gonna be at kind of one specific point.

We really appreciate again when using the word dynamic that sometimes they’re gonna have days where they’re really, really struggling. Even though they might be fantastic at school, they might be wonderful at reading, they are gonna have days where things like that kind of anxiety and emotional baggage seems huge, and they they really struggle to say go into school in the morning. So it’s just it’s being understanding that this is quite normal for a lot of young people, particularly if you’re neurodivergent.

And then the other thing is finding out about ADHD. So finding out about ADHD can be really, really useful. If your child’s got attention and concentration difficulties, please do think about some of the strategies that might help them because then you can put those in place, find out if they’re useful, and what works for your child. So two main websites are the ADHD Foundation and ADHD UK, and I’d really urge you as parents to kinda have a look at the information and see whether anything seems useful for your young person.

One of the aspects about this process and being on a assessment pathway is sometimes you can feel that you are sharing lots of information about what your child finds difficult, what their needs are. And actually what we really, really want to do is think about what your child’s strengths are as well. We know that young people and adults who are neurodivergent, who are autistic, or have ADHD have some absolutely fantastic strengths. Because the brain works differently, It means they can think about things in different ways. So there’s some examples here.

So things like the attention to detail, the ability to focus really intently on something that’s interesting. Even creativity can really shine through for some young people, thinking about visual skills, just that acceptance of difference if you yourself have a brain that works differently. Things like honesty, memory for certain things. So do work with your young person. Find out what their strengths are and really kind of think about playing to those strengths, building their strengths, working on their self esteem. We know every young person we see and every child is unique, and we really want to try and understand, you know, what the good things as well as the things they find more difficult.

So what we’re gonna do now is we’re gonna pass on to Hannah, and Hannah’s gonna talk a little bit about finding strategies to help your young person.

Thank you, Sarah.

So we’re gonna look at how we can find some strategies to help while you’re waiting for your assessment.

The first strategy that we like to think about is and the idea of everyone having a stress bucket, and this is a strategy that will help you understand your child’s strengths and needs as well as your own.

So if we imagine that everyone has a bucket, and that includes us as parents, and during the day, that bucket gets filled up with balls which represent the things that cause us stress.

This might be small things like your child’s shoes feel uncomfortable or maybe something slightly bigger like worrying about an exam or worrying about being late for school or forgetting an item.

It can be useful to think about those things that create stress and barriers for our children during the day.

As adults, we can learn ways to prevent situations that cause our children stress, or we can try and help relieve the load in their buckets by giving them some strategies to cope and by giving them time out to recover from the overwhelming emotions that can come when our bucket is full.

So when we think about the bucket, we think about the following factors.

What kind of things are impacting how full that bucket gets? So we think about these areas. Firstly, communication.

Do they understand what’s being said to them? And are they able to communicate how they feel and what they want?

And then social situations. Do they have the skills to manage their situations that they’re finding socially throughout the day, particularly at school?

And then the environment, which is a really big one for children who might be on the spectrum, and it can include so many things like sounds, smells, textures of clothing, textures of food, whether they’re feeling hot or cold, whether it’s too bright, whether they’re feeling internally well or hungry or thirsty.

There is a lot to consider here.

And then control.

Does your child know what’s happening to them during the day? Do they know what’s going to come next?

These are things that can really impact them.

If you are able to help get rid of any of these balls that are filling the bucket, it’s going to help. For example, if you are able to provide something like a visual timetable so that your child knows what’s happening next in their day.

Or maybe it’s just as simple as making sure their socks don’t have seams in. Or maybe they need a quiet space in their room that has no sensory stimuli to help them calm down after a busy day at school.

Have a think. What are the things that are causing your child to have an overloaded bucket? And we do have a really good link for a video at the end of these slides, which illustrates the stress this strategy further.

Then we’re looking at some behavioral strategies for attention and concentration difficulties. And different strategies are going to work for different children at different times.

So have a think about using movement strategies that will help improve your child’s concentration.

For example, providing maybe fidget toys or a wobble cushion to sit on and maybe having regular exercise breaks or movement breaks.

It might be necessary to adapt a routine in order to have movement breaks during the day, particularly at school.

And maybe reducing screen time, particularly before going to sleep, will also help.

It can also be useful to find strategies that will improve their organization. So for your older child, that might include things like having a timetable so they know what’s coming next, creating lists, using reminders or timing functions to help remind them of things.

It might be necessary to consider their diet and choosing to avoid foods that might increase your child’s energy levels. For example, avoiding high sugary foods and energy drinks, and anything that might cause a burst of energy release.

If you are in wheelchair and you need to access the single point of access, the number is o three hundred two four seven zero zero nine zero, which is available from Monday to Friday nine AM to five PM, and you can also contact them via email.

If you live in Bath or Northeast Somerset, the single point of access can be reached through o three hundred two four seven zero zero five five, Monday to Friday, nine till four thirty PM, and the email is listed here.

Do contact either of those numbers if you need to reach our team.

If you are in Wiltshire, here are some useful contacts for you.

The top link is the neurodevelopmental pathway team.

Our website provides further advice and information.

The Wilshire Parent Carer Council is a really important one. You can phone or email for support and advice.

If you go on their website, they have a a helpline that you can call.

And on Wednesdays and Fridays, they have a dedicated neurodevelopmental helpline that runs between ten o’clock and five o’clock.

The Wiltshire local offer outlines all the help and support that is on offer in Wiltshire, and then the school nursing team is listed at the bottom there.

You can access them through the single point of access team under option one. They are able to provide advice and support on a number of issues that might be impacting your child, including emotional difficulties, behavior, sleep concerns, and diet.

If you are in Barth and North East Somerset, some of these will hopefully be useful to you.

We recommend you contact the parent carer forum, which is available through that website. They also have a telephone line, and you can email them for further advice, support, and recommendations.

The Bath School nursing team can also be accessed via this website.

They also have a telephone number available if you click on that link. They can also provide advice and support with some of the strategies that we have mentioned today.

And then the Baines local offer is also outlined here as well. It’s also worth mentioning that wherever you live, it’s worth contacting your GP if there are any underlying issues medically.

If you are interested in finding out more about autism, then we recommend the following websites. You will probably heard about the National Autistic Society, and they and also Ambitious About Autism are national charities.

They aim to provide support and raise awareness about autism. They have some really good videos on their website, particularly ambitious about autism if you’ve got an older child.

And the amazing things happen videos are available through this link. Again, just as Sarah said, they are short animated cartoons, and there is one available for ADHD and one available about autism.

And this is the link here for the stress bucket video that I mentioned. Do check that out particularly if you have an older child who can understand the concept of having an overloaded bucket and what they can do about that.

Again, if you are, think that your child might be on the autistic spectrum and you’re waiting for an autism assessment, then do look at the autism central website.

Autism central is a, as it says, it’s a central location for local autism support groups, and they have all put their information in one place. It’s a really handy website to know about.

For the southwest where we live, the local hub is the Bristol Autism Support Group, and you can look on this website here to see what courses are available and the support and advice that’s available on this website includes things like notifications about coffee mornings and support networks local to where you live, but also free online courses that you can sign up for to deal with to look at things such as masking and behaviour, anxiety, sensory processing and other relevant information. You do not need a diagnosis to access this support. There are also one to one opportunities where you can click on your local hub and book a one to one support call, which is obviously again free. We really recommend that you do that in order to speak to somebody who is a parent support adviser and somebody with lived experience of autism.

In terms of ADHD and finding out more information about ADHD, as Sarah has already mentioned, the ADHD Foundation can be found in this web address and ADHD UK.

They have both got lots of information about what ADHD is and how we can support young people who have ADHD.

And then down the bottom there is a link to some video resources to support your child’s mental health.

These videos cover the topics of eating, anxiety, self harm, school refusal, managing uncertainty and change, and trouble sleeping.

Thank you so much for attending our video today, and we hope you have enjoyed this and find it helpful.