Is an autism diagnosis worth the hassle?

[lwaveit]

If child gets on fine academic wise and socially but shows mild signs of autism is it really worth going through the hoops to get a formal diagnosis? What benefit is there to the child if there doesn't appear to be any additional needs?

A diagnosis is always worthwhile. It can provide a sense of identity and understanding to the individual. It can help others understand the child better. It also brings protection under the Equality Act.

A child with autism is likely at some point to need additional support.

If the child doesn’t appear to have any additional needs they won’t be diagnosed as in order to be diagnosed one must have “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” which “limit and impair everyday functioning”.

I'd be interested to hear any other perspective on this - does the diagnosis affect the child further.

From experience, I was advised by a nurse 6 years ago after I was concerned with the melt downs each day to be very careful about placing a label on my child as once they got it that's it for the rest of their life. Negative attitude towards Mental Health even then, 5 years later transition to high school was to much, stopped going and then an overdose. We are in a good place thanks to the Doctors however I was completely unaware that many children with ASD often have co conditions and it was this condition that was leading her with negative thoughts. We were very lucky but please even if mild symptoms now always best to have the assessment as support for education can be tailored as and when they need it also allows quicker access for mental health conditions straight away instead of waiting on a long list like we did because I never had it documented and Girls will mask symptoms from an early age and you may think they are ok but deep down they are building up all those symptoms and they need help from an earlier age. Hope it helps give you some more insight although it sounds negative just wanted to show what can happen but not always.

I think the main issue with not seeking a diagnosis is that further down the line if they do start having issues you then have to go through the diagnosis process first and it can make getting support in place take longer. I know support shouldn’t be based on diagnosis but we all know the reality is it makes it much more difficult

That's really helpful as I had also heard that getting a diagnosis when older is also difficult.

Has anyone ever had a response that there isn't autism and gone through the process again with a different outcome?

I took my son to the GP at 18 months as he was exhibiting some of the autism “red flags”. He referred him to a paediatrician who said it was too early to diagnose. Then coming up to age 4 his preschool got an Ed Psych in to assess him and also recommended we go back to see the paediatrician - was told again by both professionals that although he has some unusual traits they didn’t see sufficient evidence to warrant a diagnosis. My son got on okay in Infants, working at or above in all subjects and having friends, though he had extra help for his handwriting and was pretty clumsy. Roll on to year 3 and his teacher suggested we go back to GP as his behaviours in class were impacting his learning, eventually seen by a doctor who diagnosed him with high functioning autism at age 9.
Now aged 10, his teacher has suggested we go for an EHCP and seek an ADHD diagnosis. I’ve gone back to the same firm who did the ASD assessment (NHS used the private firm to help with their backlog) and even going privately they are talking about 12-16 weeks for assessment. We are keen to get it done asap to feed into the EHCP process, if we went via the GP we’d be looking at 12-18 months or longer. Looking at the cost of these assessments I am so glad we got the ASD one when we did and are not trying to do it privately.
So, in short, when my son had his ASD assessment I didn’t think he would be diagnosed, but it was doing it as school felt it was worth doing. Now we have it, my husband is relieved as it explains so much, our son’s behaviour is not naughtiness or as a result of poor parenting, but down to his condition and the way his brain works. We understand him so much better now and have some useful strategies to help him (and us!) cope with the day to day stuff most people take for granted. We’ve been advised that although our son has been doing well at school (academically, not so much emotionally) as the curriculum speeds up in secondary he is likely to struggle more and more. Classes of 30 children just aren’t going to work for him and we are now seeking assessment of his needs (Ed Psych and Speech & Language) to understand what type of setting will enable him to thrive in education and not become a school refuser which we are starting to feel concerned about.
This time last year I didn’t think my son needed an ASD assessment/diagnosis but now I am so grateful that he has it and seeking more information to ensure he gets the support he needs.
Sorry for the long post but I hope this has been helpful.

Also, I don’t think ASD is a negative label, and my son is proud of his ASD and the strengths that he has because of it. Our diagnosing doctor told him to focus on the positive aspects of the condition rather than worry about the negative ones, but obviously we do need to support him to find strategies to deal with the negative aspects.

That is helpful thank you.

I would encourage anyone thinking about whether it's "worth" getting a diagnosis to have a read through anyone posting under the hashtag #ActuallyAustistic on Twitter. I've found it so helpful and educational to hear about the experiences of autistic adults, who kindly give their time to explain their lived experience and how life-changing a diagnosis often is.