We are concerned about accessing educational support.
Educational support is one of the major concerns for many families who access our service. There should be support within schools if a child has additional needs, without them requiring a diagnosis. There can be differences between what is noticed at school and at home and so it is helpful for parents to meet with the SEN department at their child’s school to share concerns and see what can be put in place to support them. There may be things that happen at school that add to a child’s stress, that then impact on home life.
Should the school and family feel that further support is needed in meeting the needs of the young person, school can request this through the Local Inclusion Forum Team (LIFT) meeting. This can include requests for Education, Health and Care Plan (EHCP) assessments, although lots of support can be put in place before an EHCP will be considered.
The Inclusion Adviser Team has a role in monitoring and supporting young people with educational needs. They are a team of experienced teachers and qualified SENCOs who work with schools supporting them to make sure that the right help and support is in place. They monitor EHCP provision as well.
Families are able to make contact with the Inclusion Adviser team, who will consider any concerns and will respond explaining the best route for support. The Inclusion Adviser Team can be contacted directly by emailing email@example.com
Parents might find it helpful to seek advice and information from:
- Information, Advice and Support Kent (IASK) service can be contacted (email: firstname.lastname@example.org; telephone: 03000 41 30 00, available Mon-Fri, 9am-5pm). They also have a Facebook page: ‘Information, advice and support kent – IASK’.
- Medway SENDIASS Service (Family Action Medway) can be contacted on 01634 566303.
- The Kent SEND Information Hub
- The Medway Local Offer
- For Parents and Carers of Children and Young People with SEN wishing to have their voices heard, please visit:
GP surgeries are also implementing ‘care navigators’, who can support parents with health issues such as anxiety and can attend school meetings. It may be helpful to ask your GP if they are signed up to this if you think this support could be helpful.
KCC have invested in training 30 people in the ‘SPELL’ approach in coordination with the National Autistic Society and the University of Kent. These 30 people will be delivering training to all schools in Kent to support with a whole school approach in understanding and responding to the needs of autistic children. SPELL stands for Structure, Positive approaches and expectations, Empathy, Low arousal, Links. More information on the SPELL approach can be found via the National Autistic Society.
Should my child be forced to answer questions in class?
It would be helpful to consider what’s tolerable for the young person and what’s likely to be too overwhelming. There is an argument for building up a young person’s confidence with certain situations that they find a little anxiety provoking, so that with time these situations feel easier. However, this may need to be done gradually and when the young person is ready. If fears of being asked a question in class are causing distress and affecting a young person’s ability to engage with learning, then it would be helpful for the school to be aware of this and adapt to meet the young person’s current needs and what they can tolerate.
My child is refusing to attend school or complete schoolwork and this is causing them anxiety. Concerns around impact of not attending school on anxiety, educational performance and future.
It would be helpful to try to get the school involved in this, trying to understand where the distress comes from and where/when it started. It would be helpful to identify the patterns of what is causing the distress/anxiety and make reasonable adjustments to lower the level of stress, as well as teaching the young person skills for coping with their feelings. This may include seeking support from mental health services.
It may be helpful to contact IASK/SENDIASS (email: email@example.com; telephone: 03000 41 30 00, available Mon-Fri, 9am-5pm) and explore the minimum core standards that school should be putting in place (see information above in relation to educational support).
If further support is needed with a young person’s emotional wellbeing then advice can be sought from The Single Point of Access on 0800 011 3474. The office is open Mon-Fri 8am-8pm. If you are in a crisis or require out of hours support, please call NELFT out of hours: 0800 995 1000.
My child struggles to wear their school uniform, particularly after a break like the holidays.
It may be helpful to get the uniform out in advance of returning to school and gradually trying things on and building up the amount of time this is worn, to help them to adjust to seeing and wearing the uniform. It may also be helpful to speak with school to see what adaptations can be made to the uniform to enable a young person to feel comfortable.
My child can struggle with the sensory demands of the classroom/other environments.
Many people with Autism Spectrum Condition experience sensory processing difficulties. They may be ‘hypersensitive’ and/or ‘hyposensitive’ to different experiences of touch, taste, smell, sight, sound and movement. They can be both hypersensitive (adverse to something) and hyposensitive (seeking out ‘more’ of something) to many different influences. Where the difficulties are severe and causing high levels of distress a sensory processing assessment may be helpful and this could be discussed with your GP to see if this is something that is available in your area. Some of the strategies and information outlined here may be of benefit and would be helpful to discuss with school:
Opportunities to explore environment
Offering opportunities to explore the environment with a teacher to explain the various sounds in a classroom e.g. a 1:1 session with the DT/Food Tech teacher for demonstrations of all the tools/machinery and their sounds.
Offer quiet space
Your child may perform better in a quiet area away from distractions.
Opportunities to eat outside of the dinner hall if necessary. This can often be an overwhelming experience for young people.
Prepare for changes
Preparing for any planned changes in the sensory environment, such as alarms or building works, and supporting them with any adaptations that they may need to cope e.g. additional breaks, ear defenders etc
Time/space to move
Your child may benefit from regular ‘movement breaks’ and enjoy doing jobs such as handing out equipment, moving heavy equipment, tidying things away, sending messages to another member of staff.
Offer breaks to stretch and refocus e.g. doing some press-ups against the wall.
Use of ‘fiddle toys’ to occupy their attention and keep their hands busy. This can help ‘centre’ a child’s attention and focus, regardless of whether they appear to be listening e.g. with eye contact.
Explore additional physical resources that can help students sit comfortably at a desk e.g. a desk footstool that can be rocked backwards and forwards to aid concentration. Your child may benefit from an ergonomic footrest cushion under the desk so that they can dig their feet into it to release any pressure build up. Alternatively, if they are stamping their feet to aid concentration, they may need to walk a little around the school to refocus their concentration.
Other ideas shared by parents
A rubber band around the legs of the chair can provide resistance and feedback for the child.
A fidget toy, blue tack or play dough may help that can be kept discretely in their pocket. You can put play dough/blue tack in a small pot/bag to stop it from getting wet and sticking to clothes.
A 5 minute time out card to rest their brain and fidget with things
Fidget beads on the wrist may help
In ear defenders can filter out background noise
Another parent shared about a backpack of sensory tools that their child takes to medical appointments that includes things to help them cope with the sensory demands of waiting rooms/medical environments. This includes things like a weighted blanket, ear defenders, tactile things that they can fidget with or pop.
Additional resources can be found here:
- Stella Parkinson is an Occupational Therapist in Ashford who has made a couple of very helpful and informative sensory videos:
I am worried that my child won’t achieve the grades that are required to enable them to move onto the sixth form at their school.
Speak with the school and see if they can consider mitigating circumstances that might have an impact on grades that do not reflect your child’s ability. It would also be helpful to speak with the school to see if they are able to make an adapted offer in relation to the sixth form placement based on your child’s needs, including the impact these might have on their assessment performance and the benefits of remaining in a familiar educational environment. Further to this it may be helpful to seek further advice from the Inclusion Adviser Team and IASK (email: firstname.lastname@example.org; telephone: 03000 41 30 00, available Mon-Fri, 9am-5pm).
Options for post-16 education for young people with Education, Health and Care Plans.
If a young person has an EHCP this will continue after they are 16 years old and can be applied at college or to an apprenticeship in order that reasonable adjustments are made.
IASK can provide a list of post-16 placements by area which can help for young people to know the options available to them (email: email@example.com; telephone: 03000 41 30 00, available Mon-Fri, 9am-5pm).
The annual review of the EHCP prior to their 16th birthday should be used to review options and to identify a provision.
Schools should also be able to support with careers advice and someone who knows the young person well can support with understanding their strengths and skills and what careers these might fit with.
I am worried about how my child will cope with the upcoming transition to secondary school.
For many children, particularly those with additional social communication needs, the transition to secondary school can be daunting. Your child is likely to require careful preparation and planning for their transition to secondary school. It would be helpful to identify the secondary placement as early as possible, so that a robust transition plan can be put in place, with plenty of opportunities for your child to familiarise themselves with the new school. Lots of schools offer additional days for children with additional needs to visit the school and get to know the new environment and what to expect. It will be particularly important for staff at their current school to share any strategies that have been helpful with staff at their future school. A resource that might be helpful is ‘Autism Spectrum Disorder and the transition to secondary school’ by Marianna Murin, which can be purchased here.
How can I provide support to my child after they turn 18 and what support can I get as their carer when they are an adult, including support from my employer.
It may be helpful to explore what policies are in place at your work to support carers (e.g. carers’ leave), as well as discussing this with your direct line manager.
The adult social care team in Kent have a specialist service for young adults with a diagnosis of autism who have already turned 18 or are approaching their 18th birthday and planning for adulthood. Alongside assessing the needs of the person with the ASC diagnosis, they also assess the needs of carers and it may be helpful to get in touch with them for an assessment by phone: 03000 41 81 00 or email: firstname.lastname@example.org
Parents often experience anxiety when young people are transitioning into adulthood and if you feel that it would be helpful to access some support with this yourself, you might find the following organisation helpful: https://www.fcstalkingtherapies.org/
If you have any questions about transition into adult services for your child, then you can contact the transition enquiries email address: email@example.com
My child struggles to regulate their emotions and can become angry or distressed quickly and I worry for their safety.
Lots of young people with social communication difficulties struggle to regulate their emotions. It can be helpful to support a young person with understanding and coping with their emotions. Identifying common patterns that can trigger a child to become distressed and addressing these; reducing stress placed upon them; and teaching them skills for recognising their emotions and coping with these will be helpful.
It is helpful to try to recognise the early warning signs that emotions may be escalating, to try to put things in place to help your child to calm down. When emotions are running high, then safety has to come first and it may be that they need space to calm down, whilst providing an appropriate level of supervision. For many young people with social communication difficulties they are dealing with multiple demands throughout the day (e.g. academic, social, sensory) and so this can make it much harder for them to tolerate frustrations that for others may seem more minor. Looking at ways to reduce this stress can be helpful.
It will be important to keep the home environment safe (e.g. locking away sharps, medications, hazardous substances/objects) and provide an appropriate level of supervision.
If further support is needed with a young person’s emotional wellbeing, then advice can be sought from The Single Point of Access on 0800 011 3474. The office is open Mon-Fri 8am-8pm. If you are in a crisis or require out of hours support, please call NELFT out of hours: 0800 995 1000; or call the emergency services on 999 or go to A&E as appropriate.
Early Help services may also be able to offer support. You can find out more by reading their leaflet for families.
Below are some more resources that may be helpful:
- This video talks more about supporting young people with emotional regulation difficulties.
- Your child may have some difficulty understanding the feelings of others as well as labelling their own emotions. They may therefore benefit from further support in developing these skills. Stories and TV programmes can be helpful with this. Parents and adults could for example point out facial expressions and discuss the emotions different characters may be experiencing. Adults can also model their own emotions, by labelling these and explaining to children why they are feeling a certain way.
- They may also benefit from use of ‘The Incredible 5-point scale’ (Kari Dunn Buron) at home. This can be used to support a young person to identify when an activity is becoming too difficult as well as identifying strategies to reduce the anxiety or removing themselves from the situation.
My child struggles to follow instructions or comply with demands placed upon them and this can frequently lead to them becoming distressed and agitated.
People on the autism spectrum or with social communication differences can, at times, find it difficult to follow instructions or comply with demands placed on them. This may result in the individual becoming distressed. Such behaviour may be a function of their environment and dealing with numerous competing demands (e.g. sensory, social, academic) throughout the day, which may lead to increased anxiety; as well as some personal factors (e.g. personality, feeling tired, pain etc). Moreover, the struggle to cope with new or novel situations or to engage in activities that compete with their interests can be a challenge. Whilst pathological demand avoidance disorder (PDA) is not a recognised diagnostic term, many parents report that they have children who cannot tolerate demands placed upon them. We still have a lot to learn about PDA but there are some ideas around it being related to struggling to tolerate uncertainty leading to anxiety and a preference for being/feeling in control. Some of the resources and strategies outlined here may be helpful in understanding and managing behavioural difficulties:
· The PDA Society recommend strategies and some books for understanding and supporting children with demand avoidance behaviours.
· The National Autistic Society regularly updates their PDA page based on the current evidence and good practice.
· You might find this podcast helpful to listen to.
· The book ‘The PDA Paradox: The Highs and Lows of My Life on a Little-Known Part of the Autism Spectrum’ by Harry Thompson may also provide an interesting insight on what it feels like to be someone who presents with demand avoidant behaviours.
Are there any support groups for children?
It may be helpful to make contact with the Kent Autistic Trust, as they are well placed to provide local information about what support is on offer. The below groups/resources may be helpful:
- SNAAP (East Kent).
- Kooth - Digital mental health and wellbeing platform for young people aged 11–25. They offer live chat, advice and peer support supervised by counsellors accredited by BACP.
- Space 2 Be Me - Offer support in West Kent to families who have children with additional needs or disabilities, such as Autism, ADHD or Down’s Syndrome, aged 6-25 years. They do not require a confirmed diagnosis for children to access their activities.
- The Kent Autistic Trust run a women’s group for those that are 18+ years and if you are interested then you can email firstname.lastname@example.org
My child has strong attachments to certain objects and can struggle to let go of things, which can cause high levels of distress.
There may be lots of reasons why some young people can become particularly attached to objects, such as them being related to their particular focused interests, wanting to retain sameness, forming an emotional attachment to an object, objects holding personalities/emotions and for some it may be a symptom of a mental health condition. It would be helpful to weigh up if you really need to help your child to get rid of a particular item. If you feel that this is necessary then explore with the young person what is holding them back from being able to let things go and think together about what you can do to make this easier. It may be helpful to develop a social story for these particular objects to enable them to be removed from the house, explaining why we sometimes have to let things go, and the possible consequences if we don’t. If there are emotions or more human qualities attached to the objects then it may be helpful to tell a story about their journey after they have left the home. For some young people who like to collect things it may be helpful to have rules about how many they can collect or it may be that they have a particular box that they can fill with objects but once this is full they then have to choose to get rid of something before they can add anything else. For objects that do have to be thrown away that have sentimental value, perhaps keeping mementos (e.g. parts of larger objects or photographs) may be helpful. If the collecting of objects is significantly impacting on functioning or causing issues with safety that you feel you need professional support with then please contact The Single Point of Access on 0800 011 3474).
For more information on social stories the below resources may be helpful:
- The book ‘The New Social Story Book’ by Carol Gray provides a helpful introduction.
- The National Autistic Society also provides a good overview of social stories and comic strip conversations with information and resources about how to write and use them.
There can be arguments at home and I am worried about the impact on their siblings.
Having a sibling with social communication difficulties/ Autism Spectrum Condition can be a positive experience; however, there can also be some challenges. It may be helpful to explain this to their siblings and if they have a diagnosis of ASC these resources may help:
- My family is different: a workbook for children with a brother or sister who has Autism or Asperger’s Syndrome’ (NAS).
- Can I tell you about Autism? A guide for family friends, family and professionals by Jude Welton (2014) may be a helpful book to talk about autism.
Siblings may be able to access support as Young Carers:
- Kent Young Carers is the countywide service for Young Carers aged 5-18 across Kent. Young Carers are taking on caring responsibilities for a family member with a long-term illness, disability, mental health or substance misuse issue.
- More information, including how to make referrals is available here.
- Young Adult Carers aged 16-25 are supported in Dartford, Gravesham, Swanley and Swale. You can read more about the service here.
- Imago offer support to Young Carers in Dartford, Gravesham and Swanley. The evolve project aims to reduce social isolation, and increase confidence and self-esteem through 1:1 support, school work, respite activities and workshops, family support and forum days. For further information please contact the KYC Hub:
- Space 2 Be Me offer support in West Kent to families who have children with additional needs or disabilities, such as Autism, ADHD or Down’s Syndrome, aged 6-25 years. They do not require a confirmed diagnosis for children to access their activities. They also provide activities for siblings. More information is available via their website:
- The Kent Autistic Trust can also provide resources for siblings and you can email Wendy Boorman to request these: email@example.com
My child will often ask for ‘one more’ thing or will repetitively ask questions.
Children with social communication difficulties can struggle to move on from activities or ask repetitive questions. What can be helpful is to agree from the outset how much time they can have to complete an activity or number of items they do/questions they can ask. Visual planners can help and tools such as egg timers also provide a visual prompt around time. It can be helpful to have some flexibility around this (e.g. plus one question) if they are struggling and to give them warnings when they are approaching the end of an activity or number of items they can do/questions they can ask. Once they have completed an activity they may need a clear plan about what will happen next to help them with predictability. It may also be helpful to support them with distraction or other strategies to help them to feel calm, as coming towards the end of an activity or being prevented from asking more questions can cause anxiety. If you are concerned about the number of questions that a child is asking and you feel that this is causing them distress and may be part of a mental health condition, again it may be helpful to seek advice from the Single Point of Access.
My child struggles to sleep
Sleep difficulties are common in in children and adolescents and particularly for those with neurodevelopmental conditions. Dr Rachel Hussey, a Consultant Clinical Psychologist who works within NELFT, provides guidance on how to support your child in the area of sleep on the following YouTube video, which can be accessed by clicking here.
East Kent Hospitals University NHS Foundation Trust (EKHUFT) have also prepared a range of talks including one on ASC and sleep. The talks are available through their website page.
If other approaches have been tried and you remain concerned about your child’s sleep it may be helpful to discuss this with your GP or Psychiatrist/Paediatrician if you are already accessing support from them. They may be able to consider medication.
My child is using recreational drugs.
This can be very concerning for parents. It is helpful to try to create space for your child to be able to talk about this with you, trying to set aside your judgements. It would be helpful to understand what might be underlying this behaviour, such as any mental health or social difficulties.
We Are With You are a service who can provide support with alcohol, drugs and mental health. Their website has helpful resources with advice, as well as information about how to access further support from their service.
It will be important for them to receive ongoing opportunities of experiencing positive feedback to further build their self-esteem. In particular, it would be of benefit for them to have the opportunity to maintain their hobbies and interests, through which they can experience a sense of achievement.
It may be helpful to explore other opportunities for them to develop positive peer relationships. You may want to consider what clubs or hobbies they could take up. To provide opportunities for them to socialise with other young people who may have similar experiences to them, you may find it helpful to get in contact with the Kent Autistic Trust for ideas and to see what events they are running:
- Twitter: The Kent Autistic Trust (@kentautistic)
If you are concerned that there may be an underlying mental health difficulty that they need support with, you can get in contact with our Single Point of Access for further advice.
My child over-eats, particularly eating lots of snacks and sweets. I am concerned about their health and also the impact this has on their self-esteem and confidence at school, as peers can be unkind about their weight.
Feeding difficulties in children are common and even more so with children with social communication differences/ASC. There can be patterns of restricted eating or over-eating, including sometimes eating non-food items (pica). There can be lots of reasons for this, such as sensory sensitivities, difficulties with social rules/etiquette, underlying emotional difficulties, boredom, desire for sameness, rigid thinking styles etc.
What may be helpful is to try to discuss this sensitively with your child to find out what might be underlying this behaviour and offer support accordingly. You may find it useful to keep a diary and monitor any patterns in their eating to get clues for what might be leading to any differences in their eating habits. This may give you ideas about how you can support them, such as how else they can meet their sensory need, scheduling In more regular healthy snacks, providing other activities for them to keep them entertained, supporting them with their self-esteem and emotional regulation, reducing demands/stress placed upon them (this may require speaking with school if this is a contributory factor) and seeking support with their mental health if you think this may be a concern (our Single Point of Access will be able to offer guidance around accessing support).
You could try taking a whole family approach to healthy living, looking at eating and staying active.
It may also be useful to see what support is available through school in relation to healthy eating and any adaptations that may be needed to support them (e.g. a private space to get changed if they are body conscious).
Some of the ideas contained in the presentation on ASD and Feeding that has been produced by East Kent Hospitals University Foundation Trust may be helpful.
My child is not eating enough. What can be done to support them.
We appreciate that this can be a really difficult position to be in for families.
If you are concerned that this is affecting their health, please arrange an appointment with your GP or call NHS 111. Should they become very unwell, taking them to A&E may be necessary.
The Kent SPA can be contacted if you are concerned about your child’s emotional wellbeing or safety, including if you think that they might be developing an eating disorder. If your child is already open to mental health services, please discuss their eating with their worker.
The National Autistic Society has information about eating difficulties experienced by autistic people.
Some families whose children have struggled with self-harm and restricted eating have found the Mind and Body program, run by an organisation called We are With You very helpful. You can self-refer on the website.
Beat is a charity which supports those affected by disordered eating and their loved ones. They have support helplines, information and advice.
My child also has tics and I am concerned about them accessing support with these at school.
Tourettes Action are a fantastic source of support and information for people with tics. Their website includes lots of information for young people, parents and teachers that it would be helpful to reference and signpost school to. They can also be contacted for support and there is a local Kent representative who can give advice and make contact and work with schools if needed. There is also a Kent Support group for children and adults with tics disorders. More information and contact details can be accessed via their website:
There is also a tics disorders pathway within the Children and Young People’s Mental Health Service. On this pathway information, diagnostic assessments and behavioural interventions can be accessed. If you are interested in this support, then please make contact with the Single Point of Access to find out more.
My child is in a psychiatric unit in hospital currently and I am concerned about whether this is the right place for them and how they will access support in the community when they are discharged OR my child’s mental health is deteriorating and I am concerned that they may be admitted to a psychiatric unit.
It is really important that you work closely with your mental health team to create a care plan that means that your child and you as a family are receiving the appropriate support to ensure that your child is kept safe and well. As services we must endeavour to work collaboratively with you and ensure that we listen to your voice in agreeing an appropriate plan. Whilst for the majority of young people we should be able to offer this care in the community, sometimes when a child’s mental health deteriorates and it is too difficult to keep them safe at home we may need to consider an admission to a psychiatric unit, which can be an ‘informal’ voluntary admission or under section of the Mental Health Act.
People who have a diagnosis of ASC and/or a Learning Disability and who are at risk of admission should be registered on a Dynamic Support Register and offered a Community Education and Treatment Review (CETR) to see whether they are safe, in the right place, and to understand their plans for the future. Recommendations from community CETRs can involve support from specialist health teams, local authority respite care, voluntary agencies, short breaks, and self-advocate and carer organisations providing support.
By understanding people’s needs and recognising early signs that might lead to a crisis it means that extra support can be put in place quickly, so the person doesn’t end up going into hospital unnecessarily and if a hospital admission is needed they can be involved to ensure that when they are discharged, ongoing appropriate support is offered in the community.
This support should be recommended by the mental health team that your child is under the care of; however, if it isn’t you can discuss with them if it would be appropriate for your child to be added to the dynamic support register and if referring them for CETRs would be helpful.
Further information about CETRs:
We currently have long waiting times for our ASC assessments and whilst we usually see people in order of referral date to ensure that these assessments are offered in as fair a way as possible, if you have a child who is at risk of hospital admission and understanding whether or not they are autistic may help ensure that the right support is in place, then please contact the Neurodevelopmental and Learning Disabilities Service, as in these exceptional circumstances we will consider seeing your child for their assessment sooner. You can contact us on 0300 300 1622 during office hours (Mon-Fri 9am-5pm) or alternatively you can send us an email and a clinician will be in touch with you:
For West Kent (Maidstone, Tunbridge Wells, Tonbridge and Malling, Sevenoaks, Dartford and Gravesham, Medway and Swale): firstname.lastname@example.org
For East Kent (all other areas in Kent): email@example.com
I am concerned that my child may be masking their autism.
It may be helpful for adults working with a child with social communication difficulties or autism to familiarise themselves with the signs and symptoms of social masking or camouflaging, as this is likely to ‘hide’ some of their needs and the support they require. We do consider whether a child might be masking their autistic traits in our assessments and the observation of your child is just one part of the assessment and we also gather information from multiple sources, such as a detailed history from parents/carers and information from schools. We also have a tool that we can use that helps us to explore whether your child is masking, so please let us know when we come to complete the assessment if you think that your child masks their autism, as we will consider this when deciding on a diagnosis.
We know that high levels of masking can be related to difficulties with mental health and emotional wellbeing. It is really important that we support our young people to build up their self-esteem and to not feel that they have to hide who they are to fit in. Whilst we may want to support them to build up their social skills to manage certain situations that they want to cope with better, it is important that the message given to them is not that their way of understanding and communicating things is ‘wrong’.
Helpful resources can be found here:
How common is it for autism to be picked up later on in a child’s development, such as when they become an adolescent? I am concerned that I might have missed the signs when they were younger.
The first piece of very helpful advice in response to this question came from a parent who said that it was important to be kind to yourself, acknowledging that professionals themselves are still building their understanding of autism, and if they haven’t been referred sooner for assessment than professionals that have met them, like school teachers for example, have also missed the signs.
Whilst ASC is a neurodevelopmental condition and there will be signs of autistic traits in a person’s earlier development, it is not uncommon for it to only be picked up later on in childhood or adolescence (sometimes not even until adulthood!). There may be a number of reasons for this such as that the autistic traits may not show themselves in a more observable way until the social demands outstretch their social communication capabilities. Lots of parents will tell us that their child coped relatively well at primary school where social interactions were more adult-led and peer-interactions were more predictable and play-based with clear rules; whereas adolescent interactions became much more difficult for them to cope with, as relationships became far more complicated, they may have different interests to their peers and people do not always say what they mean, with things like ‘banter’ or jokes becoming difficult to understand. The increased academic and sensory demands of secondary school can also mean that autistic traits become more noticeable at this point.
Conversely there will also be some young people where autistic traits were more notable at a very young age, such as at nursery school or early play groups; however, as they have got older they have learned good skills for masking/camouflaging their autistic traits, where they emulate the behaviours of non-autistic people to try to fit in, and it is only the young person themselves and people that know them very well that can see the signs of autism.
No two people with autism are the same and when we undertake our ASC assessments we consider information from lots of different sources to try to think about what a young person’s strengths and difficulties are and whether or not they are autistic. This is a complicated process even for us as people that assess for autism as part of our jobs and there is no ‘black and white’ test like a blood test that can tell us if someone is autistic. So as the inciteful parent said, don’t be hard on yourself if you missed signs of ASC in your child’s earlier life. The important thing is that you accept your child for who they are, with all of their unique strengths and differences.
What will the Autism Spectrum Condition assessment look like?
We gather information from multiple sources:
- We will review the questionnaires and reports provided parents/carers and school
- A parent/carer interview will be completed to gather the developmental and background history, as well as current information about how a child is doing, with a particular focus on their social communication and interaction skills as well as any repetitive behaviours and their interests.
- The child will be offered an observational assessment. The assessment may involve the young person chatting with a clinician and completing some tasks. Sometimes the assessment may involve the child and parent playing some games and interacting, whilst the clinician/s observe. We expect young people to be anxious in a lot of these assessments. We don’t want to do anything to distress them and if they cannot manage then we will make another plan about gathering the information in a different way. This is also the case for young people with selective mutism where we adapt the assessment to help them as much as possible. If you have any concerns when we come to book your assessment, please let us know and we will make any adaptations we can.
- We try to give feedback on the day where possible. If we have not been able to reach a conclusion we will make a plan with you to gather further information. We also aim to provide the report to families within 4 weeks.
How do I have the conversation about autism with my child?
We would always recommend that you discuss a child’s diagnosis with them, as this will be important in them developing their sense of identity as an autistic person. For many of the young people we assess they already recognise their differences and may suspect that they are on the autism spectrum and a diagnosis can come as a relief and help them to understand the challenges they experience in the context of their autism, rather than as personal traits, which can affect their self-concept and leave them feeling isolated.
Conversations about autism are likely to be ongoing rather than a ‘one off’ and these conversations are likely to adapt and grow depending on your child’s stage of development and their relationship to the idea of autism and what this means.
When we talk to children about their diagnosis we try to do this in a way where we celebrate neurodiversity – we are all different, with unique strengths and challenges. Autism does not mean that there is anything wrong with a person; however, we do recognise that for many autistic people, living in a non-autistic world can be difficult at times. Whilst they will have many strengths, there may be times that their differences in understanding, experiencing, communicating and behaving might make life tricky.
For children who struggle to accept their diagnosis, a more gentle route in may be thinking about the areas they identify in their lives as regular difficulties for them and then relating these back to potential autistic traits. Drawing on autistic role models that they may relate to may also be helpful. There are no two people with autism who look the same – once you have met one person with autism, you have met one person with autism! Stereotypical views of what autism can look like can sometimes act as a barrier to a person being able to relate to being autistic themselves and so showing how different people on the autism spectrum are can also be helpful.
The below resources might be helpful to support in your child in developing their understanding of autism:
- The National Autistic Society website contains helpful resources.
- A video titled ‘Amazing Things Happen’ is available here, that might be helpful to understand the diagnosis.
- This video also talks through what it means to have a diagnosis of ASC.
- A comic strip explanation of what is meant by the ‘spectrum’. This may be helpful for your child, perhaps further along the line as they are developing their understanding of their diagnosis.
- It can be helpful to draw on autistic role models that you think your child may relate to:
- Daniel Tammet has written a book about his experiences of having ASC: 'Born on a Blue Day'
- Rosie King is a writer and public speaker from Wakefield. She has a diagnosis of Asperger’s Syndrome and has been interviewed widely in the media from a young age and delivered a very well received TED talk. She is one of the writers of the CBeebies series Pablo, and voices one of the characters.
- Gerard Groves is a digital producer and presenter and works for BBC London. He has made a video about his experiences of having ASC in the workplace.
- Siena Castellon is a young person with a diagnosis of ASC, who is an advocate for neurodiversity and the founder of the Neurodiversity Celebration Week. She has written a book about her journey with ASC: ‘The Spectrum Girl’s Survival Guide: How to Grow up Awesome and Autistic’
- Libby Scott and Rebecca Westcott have written a fictionalised portrayal of an autistic girl based on Libby’s own experiences of autism with diary entries written by her as an eleven-year-old.
Selective Mutism: How best to support my child with it when it happens?
Selective Mutism is an anxiety-based condition so supporting your child to understand the things that trigger their anxiety is a good first step (e.g. social interaction, crowds, school situations).
Once they recognise their triggers putting in place a way that they can communicate they need help is important, this could be a card or hand signal to remove the need to speak but still promoting their independence and removing the need for others to speak for them.
Once triggers and a way to communicate the need for support are in place it can be good to make a list of things that help (e.g. going to a quiet space, having a drink, movement break, relaxation) and the young person can then be supported to try these things to reduce their anxiety and hopefully increase their capacity to then communicate.
With all anxiety issues there is a balance between not pushing yourself to become overwhelmed and the anxiety to be traumatic but also not avoiding too many situations as we know that it will become harder to do anything.
It is important for school to be aware of these strategies and to put these in place consistently and for these to be similar at home and at school.
NELFT Children and Young Peoples Mental Health Service recommend you discuss your concerns with your GP or other mental health professionals involved in your care, to see what services are available to support you with this locally.
For further information and support see SelectMutism,org. Note that recommended routes of support on this website are those of the charities website and not of North East London Foundation Trust (NELFT).