Talking To Your Child About Autism
It’s your choice when you want to tell your child about their autism.
Some parents do it straight away, while others wait until their child’s a bit older. There’s no right or wrong time.
When you tell your child, it may help to:
- do it when they’re feeling calm or relaxed
- talk to them in a place where they feel comfortable, with no distractions
- explain they do not have an illness, but they might need extra support to help them with some things
- explain they might find some things harder than other people, and some things easier
- bring them to a support group to meet other autistic children
The Autism Easyread guide from the National Autistic Society might help you explain autism in a way your child will understand.
Do I Need A Diagnosis
For some people having a formal diagnosis can help simply by giving the person some answers.;This will help them to understand why they may have been struggling with particular issues.
It may also be helpful in school/college/university life and in the work place in evidencing why someone may need additional support or reasonable adjustments to be made to help them.
For other people, they may have long suspected that they have Autism but dont wish to have a formal diagnosis.;They may consider their Autism to be a private matter and may feel that they dont want to be given a label.
It is up to each individual to decide for themselves what is best for them.
At Derriford Autism Service, we dont insist upon a formal diagnosis as long as the person wishes to be known to the service. This information will not be shared outside of the Hospital, and will only be used to alert staff of the need to consider offering you Reasonable Adjustments.
Signs Of Autism In Children
The signs of autism can change as children grow babies and toddlers show different signs of autism than children aged 4 and older.;
Babies and toddlers
Signs of autism in babies and toddlers can include a number of things that affect different parts of their life and behaviour.
Autistic babies and toddlers might:
- start talking later than most children
- seem less aware of others around them for example, they might not respond to their name being called
- make repetitive movements when excited or upset – for example flapping their hands, rocking back and forth, or making the same noise repeatedly
Autistic babies and toddlers might not:
- smile back when you smile at them
- point to show when they want something
- point to show you something they find interesting
Autistic babies and toddlers might:
- spend a long time setting up toys in a certain way, and set them up the same way every time
- enjoy lining toys up in order, or watching parts of them move
Autistic babies and toddlers might not:
- seem interested in playing with other children their age
- seem to use their toys to make up stories or pretend they might also start pretend play at a later age than most children
Autistic babies and toddlers might:
- react strongly to sounds, smells, touch, tastes, or things they can see for example, if they like the way a stuffed toy feels, they want to spend a lot of time stroking the toy
- become upset if given something to eat or drink thats new to them
- eat a limited range of foods
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A Quick Guide For Young People And Their Families
More than 1 in 100 people are autistic.;This affects people in different ways. It can bring strengths but also some challenges that can impact on how comfortable, healthy and happy you feel. Getting the right diagnosis and support is important.
This guide is for young people, who are of secondary school age, and their families or adults with parental responsibility.
I was so relieved when I got my diagnosis, it felt like recognitionFran, a person with autism
Social Media And Forums
There are many people with experience of autism offering support and sharing their stories on forums and social media.
You do not have to talk to others in online groups, but it can be helpful to look at what they’re saying.
A good place to start is the groups run by autism charities. But bear in mind the NHS does not monitor these sites.
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Theme 3: Inadequate Provision For Post
Adults and parents reported feeling directionless after they had received the formal autism diagnosis: more information of where you can get help rather than just sort ofbe dumped after the diagnosis. . Parents, in particular, complained about the lack of a follow-up appointment with the diagnosing professional or a member of their team: Getting the diagnosis is only the start of the journey and as far as the paediatrician was concerned, that was the end of the journey. ; and felt that information needed to be more readily offered to autistic people and their families: to support you and direct youthis is where the system fails. . This lack of advice and guidance was particularly difficult given that parents and adults were often struggling to make sense of the diagnosis and what it meant for them and their family. As one adult explained: I dont think diagnosis in itself often helps you we profile people after theyve been diagnosed so that they can understand how they are, and who they are, and look at where their weaknesses are and when their strengths are.
I Think I Have Autism
Not everybody is diagnosed with autism as a child. In fact, many adults go through life without a formal diagnosis.;
While not everybody wishes to seek a diagnosis, it can help to answer questions about your life experiences or explain why you might find some things more difficult than others.;
A formal diagnosis may also unlock extra support, such as access to benefits or care services.;
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Implications And Recommendations For Future Research
Social factors were not only explicit in guidelines, but were central to them. However, an observer might be forgiven for assuming these are subsidiary factors in diagnosis, with the more medical symptom checklist at its core. HCPs are expected, as outlined in DSM-5, to integrate the social, psychological and biological in case formulation, however, greater clarity about how this should operate would be helpful. Our findings suggest that more detail about how clinical judgement should consider social factors in diagnosis would provide a more transparent guideline for HCPs.
We would not recommend greater rigidity within CPGs when evidence for best diagnostic practice is inconsistent , and which may restrict HCPs in making decisions that are in the best interest of the person coming for diagnosis. Rather we recommend a more explicit acknowledgement of social factors in CPGs with advice about how they should be managed and operationalised to enable more consistency of practice and transparency for those coming for diagnosis.
Causes Of Autistic Spectrum Disorder
No one knows exactly what causes autism spectrum disorder . Its likely to be a mix of factors rather than one single thing.
ASD runs in families if a child has ASD, theres about a one in 10 chance their brother or sister will have it too. Other factors that may play a part include:
- their parents being over 35 when they were conceived
- being born early and underweight
- getting certain infections as a developing baby or soon after birth
- the health of their mother while pregnant, for example, diabetes, high blood pressure or a vitamin D deficiency may increase the risk of ASD
Lots of research has proven that there is no link between ASD and the MMR vaccine.
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Mdt Working And Views Of The Family
Guidance about how HCPs can reach a consensus with others in a multidisciplinary context or deal with patient/family disagreement or desire was lacking, leaving interactional factors as key to the process but largely unexplained. Whilst it might not appear to be in the remit of CPGs to make specific recommendations about how teams are organised and configured, particularly across different health systems, we argue that team functioning as a key shaping factor in diagnosis requires more attention in CPGs, to ensure clarity of roles and transparency for those coming for diagnosis. Similarly, as acknowledged by some CPGs, desire of the patient/family can influence the diagnostic process, therefore CPGs should offer guidance about how that might be managed.
Associations Between Age At Diagnosis And Child And Family Characteristics
Information on the number of children, their sex, diagnosis, language ability, learning/intellectual disability, other additional diagnoses, regression, support needed, and presence of relatives with ASD and BAP are presented in Table;, and statistically significant results noted. The variables for which there was no significant difference in mean age of diagnosis were sex , epilepsy , sibling with ASD and family member with ASD .
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Recommendations For Improving Waiting Times To Start Diagnosis
- Local areas should be held to account for meeting average waiting time targets for starting a diagnostic assessment.
- Adequate funding should be provided to support local areas to ensure no child or young-person is waiting longer than three months for initial diagnostic assessment, and national standards on autism care are met.
Why Is It Important To Diagnose Autism And How Do You Persuade Parents Of This
It is so important to diagnose ASD, as without a diagnosis this can make so many areas of life difficult, distressing and bewildering for the undiagnosed person. This can result in difficult behaviours, social isolation and young people who do not attain their best ability in school. Once diagnosed, the young person can understand themselves better and realise that are not alone in the way they feel. Their parents and the professionals working with them can all learn how best to help them. The right services can be accessed and adaptations can be put into place in the educational setting. A diagnosis can prevent so much distress as the child develops and can stop further psychiatric illnesses developing. Some young people with ASD do benefit from medication to help with anxiety or low mood or to help manage some behaviours, but these would need to be prescribed by a child and adolescent psychiatrist.
It is important to explain to parents and young people there are so many positives about ASD. Some of the most successful people in the country have a diagnosis of ASD. They can still achieve whatever they wish in life. People with ASD often make really loyal friends but may have a smaller group of friends. They become good employees, as if they work in their areas of interest, they know all there is to know about the subject. They think about problems in a different way and often find unique solutions.
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Funding For Assessment And Diagnosis Of Autism
You can have your child assessed for autism through the public or the private health system.
Public assessment services are funded through your state or territory government and are often run through hospitals or health services. These are offered at no cost to families, but many have long waiting lists.
The other option is to be assessed privately. A paediatrician can refer you to another professional to confirm the diagnosis. A private assessment can be expensive, and there might also be a waiting list.
You can claim a rebate from Medicare to help with some of the costs of the assessment sessions, but theres still an out-of-pocket expense, and youll need to cover the full cost of any more assessment sessions. You might also be able to claim some of the fees through your private health fund, if you have one.
When youre deciding whether to go through the public or private system for assessment, it can help to ask:
- Is there a waiting list? How long will it take before we get our first appointment?
- How long will it take until the assessment is finished and we get the results?
- How many sessions will you need with me and my child?
- Can I claim anything back from Medicare?
- Can you give me an estimate of my out-of-pocket expenses?
- Does it cost extra for the report about my childs results?
Why Some Children Get A Late Autism Diagnosis
Many autistic children are diagnosed in early childhood. But for others, the behavioural signs of autism might not be as clear. It might not be until theyre at primary school or even secondary school that the question of autism comes up.
During these years, social and behavioural differences can become more obvious as children respond to the social and educational challenges of school and friendships.
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Why Have I Been Offered An Assessment For Autism
You might be offered an assessment if you or people in your life think that you may have someof the signs of autism. These signs may include:
- finding it difficult talking to and being with other people
- having unusual or intense interests
- finding some situations and experiences difficult to cope with
- sometimes finding noise, touch, taste and texture, lights or smells difficult to deal with
- strongly preferring your usual routine
- developing more easily in some areas than others.
Having an assessment means you can talk about these things and find out possible reasons for them.
You may want to discuss what you find difficult more informally with someone before having an assessment, to help you decide if now is the right time for you.
You may also find it helpful to talk about this with your school, doctor or social worker, if you have one.
What To Do If Your Gp Is Dismissive
If youre unlucky, you might find that your GP is dismissive of you. This might be because they dont know very much about autism, or that they have outdated, stereotypical ideas about what autism looks like or even believe that adults cant be autistic.
If youre good at masking and pass easily as neurotypical, your GP may be surprised by your self diagnosis, and might not be inclined to take you seriously.;
They may ask why you want a diagnosis. If you are good at masking, they may also tell you how little support youll be entitled to afterwards implying that without access to support there is little point in getting a diagnosis at all .;
It may help you to have your answers to these questions prepared in advance .
Be prepared to be put off. If that happens, try to insist that they at least have you fill in the pre diagnostic questionnaire .If you get nowhere, you can ask for a second opinion / make an appointment with a different GP in your practice. You can also make a complaint if you are not able to get a GP to refer you.
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Psychiatry Uk And Asd Assessments
ASD assessments performed by Psychiatry UK Consultants involve filling in an ASD Pre-assessment Questionnaire in advance of the assessment, followed by an online assessment which can take up to two hours. In the first instance we meet with the patient for one hour; if additional time is necessary either with the patient or an informant, a further appointment will be arranged.
It is advisable that prior to asking for an ASD assessment you take an AQ10 screening test; if the score is lower than 7 out of 10, the likelihood of a diagnosis of ASD is low, therefore we do not recommend you have an assessment, unless you would like us to rule it out.
Diagnostic Criteria For 29900 Autism Spectrum Disorder
To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction plus at least two of four types of restricted, repetitive behaviors .
Specify current severity:
Severity is based on social communication impairments and restricted, repetitive patterns of behavior.
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Diagnostic Uncertainty And Judgement
Uncertainty about diagnostic thresholds and differences in diagnostic criteria make clinical judgement key to the diagnostic process and yet how this comes about was not clearly defined. The extent to which diagnosis should be based on underlying symptoms versus contextual factors such as wider needs or circumstances of the individual was unclear. In addition, how HCPs consider the consequences of the diagnosis for the patient and their family was unclear, although there was a strong link described between diagnosis and access to support.
Ambiguities in CPGs suggest that guidelines have limitations in how far they are able to promote consistency across practice especially given the lack of a biomarker for autism, the reliance on observed behaviour and family narratives for diagnosis, and the differences across health systems. However, adults, children and families coming for diagnosis might expect a consistent process of assessment in keeping with a framework outlined in CPGs, as CPGs become a fixed reference point both for HCPs and the lay public. There is, therefore, a tension between potential expectations of those coming for diagnosis that there should be a uniform process; and the flexibility HCPs require to respond to individual need.