Autism mythbuster

Children and young people do not need a diagnosis to get support in school. Schools must do all they can to make the special educational provision that a child needs. The only time when a child would need a diagnosis in education would be in order to access an autism-specific special school or Integrated Resource.

Most of the support around managing sleep, behaviour, sensory processing, anxiety, emotional regulation, eating and impact on siblings can be accessed through a combination of parenting courses/groups, Family Intervention Service workers, websites, and local support groups and charities.

Many children are complex and will not fit neatly into one diagnosis or another. These children will never have one label or diagnosis but a description of their difficulties and what support they need. These families can still access support based on needs.

Visit our autism resource page for a full list of what support is available.

A diagnosis does not equal lots of extra support. Some children will receive a diagnosis, but will not need a significant amount of extra support. Support should always be tailored to need.

There is no medical treatment for autism, but most children benefit from different strategies and approaches to help them develop and learn. It is also important for those around the child to learn about autism and how they can adapt their interactions and the environment to support children. Families often also require support too. It is important that the right supports are available at the right time

After an autism diagnosis, families can expect the following:

• A follow-up phone call by a support worker soon after diagnosis. The support worker will answer any immediate queries and give parents details of the parenting workshops.
• One appointment with a paediatrician after the diagnosis, to discuss the diagnosis and any further investigations or assessments that are needed. Children will be discharged from follow-up after this appointment unless there are ongoing medical needs or they need developmental follow-up. Children are referred on to sleep workshops, Family Intervention Service sleep practitioners or the sleep clinic at Sheffield Children’s Hospital if there are still sleep concerns after attending the initial workshops. These services can all be accessed without a diagnosis.
• An information pack with details of local and national support groups and information websites. The same information is contained in the assessment booklet available on the Autism support webpage.
• An invitation to attend post-diagnosis workshops. These are run by the autism nurses and give advice on what autism is, sleep, eating, managing behaviours, toileting, and what local services are available. All of this information is accessible in various forms before diagnosis.
• The autism nurses also offer one-off clinic appointments or short blocks of sessions covering sleep, behaviour, eating, emotions and anxiety.
• If relevant to their child, parents can be referred to additional workshops which give them further strategies to use. These include:
  • Sensory workshop. The information provided in this workshops is also available on our website. Please note: The sensory team do not do any individual sensory assessments. They deliver the workshop and support schools to identify sensory needs and implement strategies.
  • Managing difficult emotions workshop. Some of this is also covered in the courses run by the Parenting Team, such as “Incredible Years Autism” and “Transforming negative behaviours”. Further advice is on the National Autistic Society website. Please note: The majority of families do not get offered individual sessions with the Psychology Service. The focus is on giving parents strategies to help their children manage their emotions.
• Social Stories workshop. These aim to help parents understand the process of writing and using social stories with their child in a range of situations. Social stories can be adapted for children and young people of all ages and abilities. A diagnosis of autism is not needed in order to access these workshops. More information about social stories is available on the National Autism Society website or at the Carol Gray website. For more information, please visit our ‘after autism assessment’ page.

An EHC plan is only needed if a child needs to go to a special school or Integrated Resource, or if they need more support than a mainstream school can normally provide. If a mainstream school can put in place the support the child needs from the resources they have available, then they should do so without the need for an EHC plan.

All schools should follow a process of assess – plan – do – review (sometimes known as the “graduated approach”) to identify, assess and meet needs before an EHC plan is applied for. More information at the Sheffield Directory.

You don’t need a diagnosis for an EHC plan. Whether or not a child qualifies for an EHC plan depends on their needs, not on their diagnosis.

There is a balance to be struck. There is strong evidence that early identification and intervention for neurodevelopmental conditions like autism provides better outcomes for children and young people. This does not mean, however, that a diagnosis or diagnostic assessment is the only way to access this. Many children, young people and adults who have some of the quirks or traits we associate with autism do really well without ever needing a diagnosis.

If these differences are not causing your child any difficulties at all, either at home or at school, then it is fine to wait and see how things go.

If your child is finding certain things tricky, then accessing the right support early can really help and potentially stop things getting worse.

For some families, it might be enough to talk to the SENCO or school teacher, access some additional strategies through the Parenting Team, attend a sleep seminar or get some advice from other parents in a similar position. However, if your child’s differences are causing difficulties at home or at school, then getting the right support from the right professionals is important. 

There are lots of ways of accessing the right support for your child. All children are different and have different needs. Some children may need health input earlier and other children may benefit from having support from other professionals either at the same time, before or after. What we are aiming for is that every child gets exactly the right support from the best professional at the right time. For some children this may be a referral for an appointment with the Neurodisability team at Ryegate, but for other children it may be that their needs would be better met by a different service in health (such as Speech and Language Therapy, Health Visiting, School Nursing, Physiotherapy, Occupational Therapy or Community Paediatrics), the local authority or education.

Please note: Ryegate is a site of Sheffield Children’s Hospital. Lots of different services are based there. The clinicians within the Neurodisability team also deliver clinics at other locations, such as Centenary House, Northern General Hospital and various Sheffield Children’s Hospital sites, so families may not always be seen at Ryegate. The community paediatric team and the neurodisability teams work very closely together, have joint training sessions weekly and the majority of the community paediatricians also work in the neurodisability team so many children may be seen in either service

This will be true for some children. There is a huge amount of specialist knowledge, evidence-based teaching strategies and support that can be provided by schools. For some children this will be exactly what they need to enable them to do well.

However, we do know that many neurodevelopmental conditions can become more apparent or cause a child or young person more difficulty as they grow up and the demands and expectations on them increase. Sometimes children do well in primary school but struggle in secondary school, when social interactions become more complex. This does not always mean they should have been referred earlier or should have been diagnosed earlier. They may have been doing well with the level of support that was in place and just need a review or assessment once the demands are greater.

Every autistic child is a unique individual, so it is not a given that they won’t have good social skills.

In order for a child to get a diagnosis of autism, they need to have difficulties in the areas of social skills, social communication and social interaction. These difficulties will present in completely different ways for different children. Some autistic children will have very limited social skills, may communicate in very limited ways and show no interest at all in interacting with other people. Other autistic children may appear to have some really nice social skills. They may be very talkative, be keen to have friends and show empathy for others. However, on closer assessment these skills may have been learnt rather than come intuitively, or they may not be at an age-expected level.

Autism should be considered even if children appear to have good social skills, as there may be subtle social communication difficulties.

Children need to have evidence of impairment in their ability to have two-way social interactions for them to be given a diagnosis of autism.

Every autistic child is a unique individual, so it is not a given that they won’t have good eye contact.

Some autistic children are able to make appropriate eye contact. Autism should not be excluded purely on the basis of whether or not a child makes eye contact.

The NICE Guidance CG128 – 1.2.7 states: “Do not rule out autism because of: good eye contact, smiling and showing affection to family members.”

Academic achievement is only one aspect of a child or young person’s life. If there are other difficulties for the child, then they need to be addressed. If a child is having to put so much emotional, mental or physical energy into doing well in school that they cannot enjoy family life or engage in anything outside of school, then they are not fine. Some autistic children will be so focussed on doing the right thing in school, following the rules and getting everything perfect, that they can’t function at all out of school or have huge meltdowns every evening. If you observe these signs of distress in your child, it is important that you raise this with the school.

All children and young people are unique individuals with individual preferences and personalities. We need to celebrate this diversity but also recognise when it might start to cause problems. Children learn many important skills through playing with others, and these are skills that they will need to be successful in later life. It is fine if a child sometimes likes to be on their own and is happy with their own company at times – provided they can also play, share, negotiate and compromise with others and work in groups. If a child exclusively plays on their own, becomes upset if others approach them, is not able to listen to others or negotiate their needs (at an age-appropriate level), then they are going to need some additional help to develop these skills. They may need an assessment to understand why they find these things so difficult.

Social workers don’t just provide support where there are concerns about parenting. They can also support families of children with disabilities to access support around their child’s needs.

There are a variety of different roles done by social workers. Some of those relate to concerns about child protection, but many roles are about supporting families. Social care can undertake an assessment of the needs of the whole family and work out if there are any other ways of providing support. They can help parents access respite services, short breaks, additional funding and more. Having a child with additional needs is really hard work, and it is okay to accept help from any agency that can offer it. There are some specialist teams that can only be accessed via social care, so we may ask social care to become involved as a way of accessing that particular help.

Many families of children with disabilities access some ‘care’ support at some point, but this is not always through a social worker. It can be through an early help service like Family Intervention Service or SNIPS (Special Needs Inclusion Playcare Service). Services can offer advice to families and support around their child’s disabilities.

This is absolutely not true. Parenting courses can be helpful for any family. There is no standard manual for parenting, and everyone needs a bit of help sometimes!

Having a child with additional needs or a neurodevelopmental condition like autism brings with it a whole range of new situations and difficulties that parents were not expecting to face. There are some specialist parenting courses that can give parents ideas and strategies that will help them support their child. Some of these are the same strategies all parents might find helpful, others may be geared more towards certain difficulties like autism or ADHD.

An additional benefit of parenting courses and groups is that parents can meet others in the same position, share advice and get support from peers rather than just professionals.

We know it takes a huge amount of energy and commitment to attend parenting courses when you have a child with additional needs, possibly as well as having other children, a household to run, a job to do, other family commitments or responsibilities etc. It is really hard to consistently put the strategies into practice – especially around sleep when the whole family is exhausted, or around behaviour when everyone is at breaking point. Sometimes the courses will give you the moral support and encouragement that you need to keep going. The courses are not about telling parents they are doing something wrong; they are about giving parents a range of different strategies and ideas so they can use the right strategy in the right situation and help their child. Parents are the ones who know their child best and who are with them most of the time, so are the people that need to have that range of strategies/tools at their disposal to help their child. 

Short breaks are available for children with disabilities where there is an unmet need – this can be any child with a disability, including those without a diagnosis.

Short break provision is based on an assessment of the level of need or difficulty. It does not depend purely on diagnosis. There will be some children with autism who do meet the criteria and some who don’t.

Over the years there have been several different terms or phrases used to refer to autism. Lots of autistic people say that ‘autism’ is their preferred term. They feel the word ‘disorder’ or ‘condition’ has negative conotations. Therefore, in Sheffield we generally use the word autism. However, for formal letters and reports, professionals use a diagnostic system which recommends the use of the phrase ‘autism spectrum disorder’ as an umbrella term and therefore you may see this written in places. Previous terms such as Asperger’s or high functioning autism are no longer used and now come under the umbrella term of autism.

It is correct that, on average, bilingual children start talking a little bit later than children who are brought up with just one language. However, they should still start talking within the normal range. Children should be referred to speech and language if there is a worry or concern about their speech development, regardless of the number of languages spoken in their household.

Makaton will not stop your child from talking – provided speech is always used when signing. Research shows that using Makaton has a positive impact on speech development. It can stimulate the production of speech sounds and words, and it can help people with communication difficulties make themselves understood after they have developed some spoken language. It is advisable to continue to use signs after speech begins. For more information, please visit https://www.makaton.org/.

Introducing a picture system like PECS can support children to communicate what they want and need, and therefore reduce frustration and possibly behaviour associated with frustration. Research shows that using augmentative communication systems like PECS does NOT inhibit speech development; it actually makes it more likely that children will go on to develop speech or improve their speech. Using picture systems gives a child a way of communicating and interacting with other people and making themselves understood, it is not giving up on working towards talking.

It is very widely recognised that some children will mask or camouflage their difficulties in school, or that their difficulties may not be as apparent in the school setting. This can be for a variety of reasons, including perfectionism, the need to follow rules, or anxiety related to autism. It may be that the school day with its rules and routines suits them better than the unpredictably of life in a busy household. Children may work so hard during the school day to fit in and not appear different, that when they get home they “let out” the whole day’s worth of built-up distress and mental effort. This can come out in many different ways. Some children may become very withdrawn, not want to talk to parents and want a quiet space to wind down. Other children will come out of school with huge amounts of pent-up energy and run, climb and bounce all evening. Other children may come out seemingly fine, but the slightest upset may trigger a huge emotional “meltdown”, which may be tears, tantrums, anger, physical acts or other expressions of distress. If you observe these signs of distress in your child, it is important that you raise this with the school.

NICE guidance cautions about making a diagnosis of autism in children under the age of two years, but we would happily see children of any age if parents or professionals have concerns. Children under two years would generally be reviewed in community paediatrics, rather than being referred directly for an autism assessment. This is because there may be other developmental conditions that need to be considered or other investigations that may be needed first.

There is a range of support which you can access while you are on the waiting list for an autism assessment. 

Please see our resource page for a list of support.

Ryegate is generally the term used to mean the neurodisability team. The neurodisability team run the specialist neurodisability clinics, like those for children with Down Syndrome or cerebral palsy. They also undertake the assessments for ADHD and autism. Schools cannot yet refer directly for an ADHD or an autism assessment. If there is a concern that a child may have ADHD or autism and it is clear that they need this assessment, then their GP, speech and language therapist or community paediatrician should make a referral.

If there are wider concerns about a child’s development, their learning or some needs/difficulties and it is less clear which assessment might be the most relevant, then the child can be referred to Community Paediatrics. This referral can be made by a SENCO. This should not be seen as a quicker or easier route into assessment, as the same process of information gathering will happen. However, it may help get children on to the right assessment pathways if the initial question is not so clear.

Autism is a lifelong condition that is associated with the way the brain develops from birth. As such, there is no ‘cure’ for autism, and there is no medication that is used to ‘treat’ autism. However, sometimes professionals may recommend medical treatments for other conditions that affect autistic people, e.g. sleep difficulties.

There are however a number of other ways to support an autistic child achieve their full developmental potential. This can include adapting the environment to make it more manageable dependent on their strengths and needs, adapting communication style or sometimes direct intervention or therapy. See our autism support page for more details.

Here is a link to the NHS website on therapies and treatments for autism that the NHS refer to as fake and harmful.

The idea of autism as a spectrum is way to describe the variety of different strengths and needs which autistic people might have. It is not a linear spectrum ranging from little to very autistic, or mild to severe.

The clinicians at the assessment appointment will discuss your child’s profile with you. This will include information about what you think your child is doing well at and what they are finding more difficult. Every autistic child will have a different profile.

You won’t be told if your child’s autism is ‘mild’ or ‘severe’ as these are generally not useful terms. The severity of any young person’s autism is strongly contextual as some environments or situations are far more autism friendly than others. This means your child might display more autistic features in certain situation and less in others.

It is generally considered useful to not regard the level of challenge or severity in a person but instead to strive for the best fit between the young person and their environment. This will help reduce any impact of their autism-related difficulties. This cartoon explains more about the autism spectrum.