Needed advice

[Dragonlady79]

My 6 yr old daughter has been diagnosed with ODD ADHD and they keep telling g me we should test for autism and yet when I bring it up every meeting or appointment they blow me off. How can I get the help my daughter needs. Desperately trying.

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Hi , I have Asperger's adhd inattentive , irlen syndrome , severe sleep apnea , aphantasia getting help is incredibly difficult , I use medications and I've tried this breakfast today and it has helped calm my thoughts .

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[Aspen797]

Does your child currently have an IEP? If not, you can request an evaluation in writing. An example letter is here: parentcenterhub.org/evaluat.... Once you also give permission for the evaluation, the school has to evaluate within 60 days. It can be very helpful, but NOT necessary, to have a medical diagnosis you can provide. The more proof that a problem is affecting your child’s ability to learn, have friends, care for her own needs, etc., the better. Outside evaluations are extra ‘proof’ though not required.

If you are seeking a medical diagnosis which opens up doors for autism therapies (speech for social skills, OT for sensory/anxiety; ASD-positive parenting coaching, etc), you can ask your pediatrician to refer you to a developmental behavioral pediatrician (find one here: healthychildren.org/English... or neuropsychologist or other licensed professional for testing.

If you haven’t already, reach out to your state’s parent resource center for parents of children with disabilities. They can provide advice and referrals. Find yours here: parentcenterhub.org/find-yo.... Also reach out to your regions Autism Society for help. autismsociety.org/contact-u...

You are doing the right thing by being persistent! With the right types of help, things will improve for your whole family.

[Tronsformer]

Starting to go through this with one of my younger kids, shes turning 3 but is defintely autistic or similar. This is after going through the process of diagonosis and coming to the realisation of my own autism a few years back.

And this is purely my point of view based on my life experiences and condition I guess and as someone who is naturally terrible at seeking help please bear this in mind. A little disclaimer I guess.

But here in the UK autism/ adhd is extremely underfunded and slow to act. Diagnosis takes years. I myself was awaiting the diagnosis result before and the await treatment or whatever was next. That was the wrong approach because there is fix, its just about adapting and coaching and finding ways. And this should happen sooner rather than later. I came to this epiphany as I accidentally attented an autism centric event and there were clinicians who were giving free one-one therapy. Although they couldn’t diagnose they pretty much did, which is all I needed to know, after that my journey has been about educating myself on this condition, I have the luxury of my whole undiagnosed experiences in life so far to qualify that those moments of difficulty were as result of this and If I had known or my parents did than it would’ve be handled better.

Now back to our kids. The reason why I mentioned this is because I asked the clinician, I suspect my child is, got some advice but they highlighted some key things. Get them diagnosed asap, because these things take years, you have already done that which is amazing, and this can be a jumping off point for anything from school to other situations where just the knowing of their condition will be helpful and ease some of the friction that many will have.

Another thing that was mentioned that, private is expensive but an option, yet some local authorities, won’t recognise it and will need whatever it is they sanction. This is going to useful for benefits or extra support in schools and eventually in higher education and work. There is nothing more tiring than having to qualify your needs all the time so this is something to bear in mind.

Now the most powerful thing I was told was that I was the most important thing for my child as my understanding of her needs, and knowing what her experiences will be like will be key. I believe the exact wording was ‘no one will be more helpfull than you!’ and this has been key. As a result I’ve stufied, researched observed, opened my mind to listen to all that I can to simply understand and then from there try and manoeuvre all obstacles.

A few things I have begrudgingly accepted,

- its going to be a constant battle to get things approved, done or even heard. This is going to get frustrating but the more I can show my child that keep that at bay will help.

- Im going to constantly need to educate those around us on what this condition is and how it will develop. I have the luxury in that I know exactly what its like. But hearing what I’m like to be around from others is super useful too.

- any help that is offered will be the bare minimum, for many reasons.

- battling frustration is going to be key

- patience is paramount, especially as long as things take regarding getting approval.

- build a good dialogue with relevant parties ie schools etc and the more they understand what we need from them the better and equally knowing what they can really do will help set expectations (because there’s always posturing at first).

- educate, this area is surprisingly backwards and slow and ignorant. Its changinng as more and more people are aware and know of people close to them who are on the spectrum and get it. But a lot don’t. Even those who are diagnosed. Sharing experiences and learning as much as we can is key. Not just essays and studies but by actual interaction and observation. Also the more we educate our own kids on their conditions is going to help them. Litte things like maybe why they have a meltdown or not everything will go their way. Empower them through knowledge if that makes sense. Its like if a kid has asthma we drill it in to them carry an inhaler and what to do in an emergency. Its also help because we the knowledge is there. For autism its just not their and not straightforward.

- keep yourself healthy, as you know kids are amazing and also stress inducing. And I worry for them soo much as is. And for my autistic child its compounded because i don’t how it will manifest, can they look after themselves when I’m no longer around? Etc. This is all ripe for ooor health on our side. The better we can look after ourselves the better we can help and love them.

Not sure if I answered this question or if this even helps but at the same time you are not alone in your experiences and there is a disconnect to getting a diagnosis. It seems a struggle everywhere.