Whether you're a child or an adult, the diagnostic process can be complicated, and so are the emotions and issues that can arise during it. Pursuing and receiving a diagnosis of ASC can be very positive for some individuals, even empowering and life changing.
It can also not be the right choice for everyone, and that is ok too. Our experience has shown us that the reasons behind the decision to investigate a diagnosis is different from person to person. We have tried to outline the various ways and reasons that show how a diagnosis can help support your situation.
For both children and adults, there is a diagnosis pathway available both through the NHS and privately. There are pros and cons for both options. Here we have broken down each option, in order to help make up your mind as to which pathway is best for your situation.
- A multidisciplinary team of specialists that assess you to the NHS standards
- If you receive a diagnosis, then it is recognised by local authorities no matter which county you live in, meaning access to support
- The whole process, including the post-diagnosis support, is free
- Accessing this diagnostic pathway through GP's can be difficult, depending on the area you live
- The waiting list for children and adults to be assessed (depending on area/county) can range from months to 3-4+ years
- Depending on your reasons for being diagnosed and other health conditions, this time frame could have unwanted adverse effects on your mental and physical health
- Much quicker process. Avoidance of any unnecessary mental and physical health issues caused by long waiting lists
- Needs can be recognised and supported faster
- Access to specialist support and potential financial support quicker
- Peace of mind
- Much quicker process. Prepare for the difference in time, so you do not get overwhelmed
- Some local authorities/NHS trusts do not recognise private diagnoses. Even though there is no legal standing for this, it can have drawn out effects such as complaints procedures and unwanted stress
As with the referral stage of the children's diagnosis pathway, there is a slight difference in the screening of preschool children and school-aged children.
A pre-schooler's health visitor can use tools, such as the social and emotional ages and stages questionnaire, alongside the standard form to try and identify any areas of concern. Your GP may use an M-CHAT (Modified Checklist for Autism in Toddlers) assessment. As these are standardised tests with scores, these offer a good benchmarking tool to highlight if further action is needed. These tools, are indicators to support referral on to the community paediatrician but do not give a diagnosis.
For school-age children, we recommend you make an appointment with the school's Special Educational Needs Coordinator (SENCO) to discuss your concerns. They too have referral channels open to them and they may have identified some concerns within the classroom. Even if your child is "holding things together" at school, it is still helpful to keep communication open with the school.
Completing the ages and stages questionnaire (social and emotional) can show up areas of difficulty relating to autistic traits that the standard ASQ would miss. This can be a useful tool to complete and then share with the Health visitor/GP to enable referral onto appropriate support. It is also perfectly acceptable to express your concerns and ask the Health Visitor to come out and assist you in the completing of this.
The diagnosis process for children in Northamptonshire is different between the North and the South and is currently under review. This section covers the current diagnostic pathway.
Once your GP or health visitor is convinced of your child's difficulties, a referral for your child is made for a formal assessment (diagnosis). You may have to wait sometime before you go for the assessment. Your child should be assessed by a multidisciplinary diagnostic team which might include, for example, a paediatrician, a speech and language therapist and an educational psychologist.
In the meantime, a referral to other teams such as a speech and language therapist, occupational therapist or portage/specialist support service will be made. These professionals may be able to help you to understand your child's needs better.
For preschool children (0-4) the Early years SEND Team (Portage) can work with the family and pre-school setting to build up evidence to support a diagnosis. This team have access to Educational psychologists who are critical to the diagnostic process. However, there is a general preference to avoid diagnosing too young. In the South of the county, preschool children are referred to the CDC (Child development centre). In contrast, in the North of the county, it would be the community paediatrician.
Once children enter primary school, it will be down to the school to commission an educational psychologist. Unless the child is disruptive and causing a problem within the classroom, they may be reluctant to do so as resources are tight. However, we suggest you follow your gut instinct and keep pushing for what you think is right for your child. For children that are of school-age, a referral from the GP would go through to the children and young people's ADHD and ASD team to undertake a comprehensive assessment.
"At 35, I was diagnosed as being dyslexic, which kind-of ticked off a few of the really limiting reading and writing issues I had. However, it wasn't until my Asperger's syndrome diagnosis at 59 that far more of my life began to make sense. I approached my GP armed with a couple of pages of info I had collated from the internet and explained to him, as at the time he knew nothing much about autism, why I felt that I could be an Aspie.
Thankfully, my GP listened and asked me what I wanted to do about it. As requested, he then referred me to the excellent Asperger's and ADHD team in St. Marys hospital Kettering for a formal NHS assessment. Ten years after my diagnosis, I now feel far happier with my Aspie T-shirt and would recommend others to consider chatting to their GP for a similar referral. Just remember, we are not broken people; all human beings are simply different"
As is the case with all diagnostic pathways, recognition of the condition is usually the first step on this journey. In Northamptonshire, the team that offers the diagnostic pathway for adults is the Asperger and ADHD team.
We have included links to several online tests that you can complete for FREE here; these can indicate as to whether you may meet the criteria for diagnosis. Please be aware they do not offer a diagnosis and are purely a guide. However, they can be a useful tool to print the result, and take with you, should you decide to visit the GP and request an assessment.
On receiving the referral, you will receive an initial screening pack, with a variety of questionnaires that you will need to complete and send back. The diagnostic team will put you on a waiting list for an initial screening appointment if they believe you will benefit from their service.
Following the initial screening appointment, you can have a second screening appointment with a clinician. This appointment takes approximately an hour and a half. You can take someone who knows you well to support you, and this can be helpful if you think you need help to get any questions, issues or concerns across. In this appointment, you are guided through a comprehensive range of questions to enable the clinician to decide if a full assessment is the best next step for you.
Before the appointment, make a visual list of what makes you think you are on the spectrum and the areas that you feel are difficult for you
If a full assessment is required, then you will be placed on a waiting list for this to happen. You should be told when the next appointment will be. The full assessment usually comprises of 3 appointments with a clinical psychologist.
This is a semi-structured interview that goes through a range of questions about your personality, behaviours and understanding of yourself and the world
In this session, the main discussion focuses on your childhood experiences. It's encouraged that someone who knows you well, ideally from when you were young attends the appointment with you, e.g. a parent or relative
During the final session, feedback is provided as to diagnosis, and any follow-up support that is available and you think you may need is discussed
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