How important is an accurate diagnosis in a child?

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Hi,

I have a son that was dxd ADHD at the age of three (now age 7). He has been on medication since he was five which helps a lot with his hyper and impulsive symptoms. He is on an IEP at school and for the most part is doing okay, the school have been very good about trying to meet his (ADHD) needs.

I have always felt that he also has an ASD (he had language delay so probably HFA rather than Aspergers), he also shows mild Tourette symptoms (which could be down to his medication).

His previous paediatrician seemed to dismiss my concerns about ASD somewhat, probably due to the fact the ADHD behaviours can mask anything else especially when he is in hyper-mode and he only saw him 3-4 times a year.

The paediatrician has now retired and we have moved to a new specialist ADHD team under the CAMHS service. I have recently had his first appointment and brought up my concerns about ASD. The practitioner didn't really agree or disagree with me, he said that ADHD is just part of the spectrum therefore similarities are inevitable (I assume this is just his own opinion as I haven't read anything officially placing ADHD on the autistic spectrum).

On some level I do agree with him but do I let it drop and accept that ADHD is bound to cause spectrum issues or do I push for a proper assessment for ASD? My concern is that whilst a lot of effort is being made to educationally meet his needs affected by ADHD, no-one will fully understand him without acknowledgement of an ASD.

Has anyone had a similar experience to this ( I am in the UK) or have any thoughts about whether a specific diagnosis is needed as he is getting help with his difficulties so does it really matter if he has ADHD, ASD or both?

Thanks.

I am in the Uk as well. My son was dx with ADHD when he was about 5. He had a lot of trouble at school until we moved him and since has done pretty well so I've not really worried. Since I became more aware of ASDs it's clear he probably actually has aspergers (a fact his school councillor agrees with) There does seem to be a lot of overlap between ADHD and ASDs but I do think an acurate dx is important not only for getting the right help now with schools etc but also later in life as an adult.

My son is nearly 14 now so I have left the decision up to him essential. I think we should go for a re diagnosis but don;t want to push hi through something that maybe very hard for him if it's not what he really wants and may not really matter in his case as he's doing so well. Originally he didn't want to go through it all again but just recently has been asking me about it and what will happen so maybe changing his mind

Hi Autumnsteps

Thanks for your thoughts. My main concerns are mainly about age 11plus when he hits secondary level it's just I am aware how long the diagnosis process can take particularly if a SEN is needed.

He is only just 7 so I might see how he develops for a little while, he only started talking properly about age 5 and still isn't a 'big' talker (if you discount swearing lol) so I feel like I am only just starting to get the measure of who he is and how his mind works (if you see what I mean).

Makes perfect sense And I know exactly what you mean about the process taking a long time. The services here for adults are virtually non-exsistant. There is nowhere that does adult dx (been trying a year with a local outreach service to get seen myself) so there isn't long left for my son either. My youngest son is 4 now and I am glad that he should have a dx before he starts full time school as it will make life easier as everyone will know where they stand, so to speak.

Have you thought about learning makaton for you son if he doesn't talk much?

adhd is not part of the autism spectrum. there may be similar traits, or adhd can be a comorbid condition with asd, but they are not on the same spectrum.

i think diagnosis can matter, but it really depends on the situation and people involved. its partly a guessing game, since none of us know what the future holds. if there are services he needs now or will need in the future that require the diagnosis, then the answer is obvious there. but if he is doing well, and not in need of anything that the diagnosis would get him, then its not so important.

i am a big fan of self-awareness, tho. if getting an accurate diagnosis would help the child understand themselves, function better in the world, and navigate the world better, then to me, thats really valuable. it also has value for future relationships. speaking as a non-asd whose partner is asd, figuring out that my SO was asd made a HUGE change for the better in our relationship. self awareness does not require an official diagnosis tho, it just requires knowledge. for some, the knowledge is enough, others may seek to confirm it with an official diagnosis.

i will say, its much harder in some areas to get the diagnosis for an adult than it is a child. so that may be worth considering if you think the diagnosis is needed or wanted later on down the road. its harder to find someone qualified to do the diagnosis, as well as being harder to diagnose due to less experienced professionals in regards to adult patients, and because adults often have developed coping mechanisms or ways to mask their observable traits.

I definitely agree about the problem of an adult having developed coping mechanisms. It has been hard for me to find all my traits and issues as I have without knowing done so much of exactly that. A year later I am still realising that things are down to AS

The main thing that came to my mind when reading your post was----How is your son doing with socialization with his peers? If he is already getting services for the ADHD, then really the only thing I think an AS diagnosis might get him is some help with social skills.

Hi there!

I would definitely push for an ADOS assessment! It isn't that stressful for the little ones in my opinion and a large part of it is you answering questions about the child. My son was diagnosed ADHD at 4 - assessed at 7 for ASD and was borderline niether above or below the cut off. We asked again last year for a reassessment when he was 13 with the result that he has been diagnosed with Autistic Spectrum Disorder/ Aspergers. Having this diagnosis will make a huge difference for him and for his family. It's not a label but a means to get the support and help that both he needs and the support the family members need. I think someone mentioned about self awareness and I agree this is so important and means that you can start educating yourself more about these disorders in order to help your son but I also feel very strongly that a diagnosis when he is young is far simpler to achieve. My father who is 63 yrs of age has just been diagnosed in the last 2 years with AS after years of misdiagnosis such as bi polar and clinical depression. It has changed his life as through his work he was referred to a councillor who has helped him enormously. My son was also on Ritalin up until a few months ago and it worked well for him while he was younger but as he has arrived at his teens he has become more and more resistant to taking it and I always maintained that if it was upsetting him I would not force it. It makes life interesting but definitely takes the edge off of the anxiety issues his AS causes him. I think having a clear diagnosis of what is going on with your son will help you to be clear about what his needs are I know it has made a big difference to us and continues to do so and my son has been happy to have it done also. Good luck with this!! !! )

@angelbear It really isn't only social skill help that these kids need - when the time is right cognitive behavioural therapy can be enormously helpful to AS peeps for all sorts of reasons not just social skills. It is also about understanding more about how the person works as a family and people who are around them understanding. Just my opinion )

[quote="Have you thought about learning makaton for you son if he doesn't talk much?[/quote]

He can talk reasonably well now (he has had speech therapy), he's just not very forthcoming with it!

Thank you everyone for your replies, I am going to read through them carefully but first glance tells me that my instinct is probably correct and to push for an ASD assessment. I suspect like some of your children he may not fit the criteria to satisfy the professionals until he is older.

I totally agree about the value of knowing yourself, probably the most valuable part of a diagnosis.

Thanks MKT. My son is only 5.5, so I am very new with all of this. My son is diagnosed as PDD-NOS, but he is exhibiting more and more AS and ADHD traits, so all of this is very interesting to me.

@angelbear happy to help!! Still learning myself it has certainly been a rolercoaster but if you can find out as much as possible from others on here it will always help. Wish I had known about it sooner!! !! Just keep fighting for you believe is right, you can't be wrong. Good luck with your son!!

Oh and also I have found that the socialising thing has become more and more of an issue as my son has gotten older so even if they are coping socially pretty well at a young age that might change over time and as they change in themselves