As a parent or carer, you know your child better than anyone else. If you have any concerns at all about development, behaviours, communication, learning abilities then it is better to try to get to the bottom of it as soon as possible so that appropriate understanding, strategies, interventions and support can be put in place. However, if it is your first child you may not be so aware of any differences and difficulties compared to ‘typically developing’ children until perhaps a friend or school teacher mentions them to you.
Things to think about
It would be advisable to keep a diary of your child's behaviours or development which are giving you cause for concern. In the diary it is worth recording the behaviour, what happened and who was involved prior to this behaviour (the antecedent), what happened immediately afterwards and any outcomes from a later discussion about the behaviour. This might be best done on a chart with those main headings and any others you feel would be relevant. This can help as supporting evidence when trying for a diagnosis but can also help you start see a pattern to the problems and perhaps put in some strategies to try to prevent or lessen future incidents.
It would be helpful to also write out a 'potted history' of your child recording the differences you noticed in general development, physical abilities, speech and language, behaviours, social skills, friendship issues, obsessions and anything else that you feel is relevant.
Read through Cambian's specialism guides on various special needs conditions and syndromes to see if you recognise your child in any of them. Some conditions can co-exist and so your child may fit into more than one.
It is also advisable to refer to any letters from nursery/school/professionals which also state difficulties your child is/was having. Ask for any information or concerns about your child to be put in writing. This is because some settings will give verbal information to a parent and then when it comes to a meeting they may say there are no problems. So, for example, if the school phone you, or tell you verbally face to face, something about your child's behaviours or any difficulties that may be having, write or email them stating something like 'Following from our talk today, this is what I understand from what was said...' It helps build up a record and a better picture of any difficulties your child is having. It may also be helpful to video your child's behaviour/reactions so that you have something to show to your GP and/or other professionals who do not see the behaviours that may be happening at home.
Is it an Autism Spectrum Disorder?
People with Autism have difficulties in three main areas, known as the Triad of Impairment - Socialisation, Communication and Inflexibility of Thought. They can also have problems in other areas such as sensory issues. Most children would have followed a normal development pattern but perhaps with some speech delay and then behaviours, communication and play, etc. would have started to regress around the age of two. In most cases they tend to have a below average IQ.
People with Asperger Syndrome, which is part of the Autism spectrum, will also have difficulties within the Triad of Impairment (Socialisation, Communication and Inflexibility of Thought), and can also have problems in other areas such as sensory issues. They will however, have an average or above average IQ and good verbal language, but cannot always communicate appropriately with others around them and will find the social side of life extremely confusing.
High Functioning Autism presents in the same way as Asperger Syndrome but with delayed speech or early speech problems.
What to do next
Talk to the school or nursery to see if they have the same concerns. By liaising with certain members of school staff including a teacher, teaching assistant or the Special Educational Needs Co-ordinator (SENCo) they can assist further and start the dialogue for you. The school can make a referral to the Child and Adolescent Mental Health (CAMHS) Team, School Doctor or Local Authority (LA) Educational Psychologist (the latter can usually only assess and not diagnose).
Speak to your GP about your concerns and show them the evidence that you have gathered as suggested above - if your child is under 5, a Health Visitor is usually a good source of advice and can carry out some simple assessments and speak to your GP on your behalf. Make sure you have an appointment with enough time to discuss everything in depth. If you are both agreeing there are concerns then ask for a referral to a child assessment/development centre or a consultant paediatrician. Don't be surprised if the GP says to come back in three months time, as children are constantly developing and changing, but if you are convinced there is something not right then stand your ground. Once you have a referral, be prepared for possibly a considerable wait before you get your initial appointment and there then may be further waiting to see a particular specialist relating to your child's suspected condition.
The third option is to pay for a private assessment or diagnosis at a private clinic or with an independent educational/clinical psychologist. Parents choose this route usually when they have become frustrated about NHS waiting times or need evidence more quickly to get extra support for an Education, Health and Care Plan (EHCP) to be put in place. Going private can be much quicker and you can usually get more follow up advice and support but take note that costs can vary significantly depending on the condition being diagnosed. Furthermore some local authorities may not accept private diagnosis results, insisting on NHS results.
Be aware - if you feel your child needs extra support in class, a school will not always take notice of a private report and will still have to refer your child on. Extra support, especially in an EHCP, is funded by the Local Authority and the LA may take the view that if a parent has paid for a diagnosis the report will say what the parents want and the authority will still insist on carrying out their own assessments.
You may just see one professional but in some cases, multi-disciplinary teams (teams made up of a number of different health professionals) may be involved in diagnosing your child, especially if your child presents as quite complex or with a range of issues. It may take several appointments with specialists to get a full breakdown for the report, so make sure you always make notes and can provide feedback for any questions answered. It is important to ensure that whoever sees your child has a good knowledge of the suspected condition.
• Clinical psychologist
• Educational psychologist
• Speech and language therapist
• Occupational therapist
The Diagnostic Report and Post-Diagnosis
In some cases the Autism is reported at the time of the assessment, but for many a full diagnostic report is shared with the parents about their child. It can be quite a shock (especially if this outcome was not expected) and the reports can be challenging to read and understand, but you can call the diagnostician if you have any questions or wish to discuss any areas of the report in more detail. An autism diagnosis can be hard to come to terms with and can affect all members of the family. Some professionals offer a follow-up service and support, they will also be in regular contact to monitor your child’s progress.
Once you have a better understanding of the report you can speak to your child’s school SENCo and see if their needs can be met at school. If the school cannot provide further support, you can apply for an assessment to be carried out by your Local Authority for an Education, Health and Care Plan (EHCP). An EHCP can help your child get the correct support and schooling.
If you do not agree with the diagnosis and complaints procedure
When it comes to receiving the diagnosis it’s important to take time to process the information given. The report may state that your child is not on the autism spectrum, or you may be given a diagnosis that you don’t agree with. You can seek a second opinion by going back to the GP and requesting a new assessment. If there was an aspect of the entire diagnostic process that you were not happy with, complaints can be made to the NHS. Otherwise if you sought a private diagnosis please contact the diagnostician for their Complaints Procedure, as required by the Care Standards Act 2000.
For more information or advice, contact us here, or call 0800 138 1184.