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Friday, October 4, 2019

So What's With Rose's Autism Diagnosis?


In November of last year I wrote about my daughter Rose getting diagnosed with autism at the age of 4 and a half, which was such a relief to me and gave me so many answers and direction. As I wrote beforehand, she was diagnosed with autism as part of a study comparing the differences between girls and boys with autism, by a specialist who is one of the top in the field in my country, which is why she was able to see that my daughter has autism, even though she doesn't present typically with it, the way boys generally present it.
With my son, Ike, once he was diagnosed by a private psychologist who specialized in autism, I just went to our local child development clinic and they confirmed the diagnosis, and with those two diagnoses, it became official in the system, and I was able to get him the services and help he's needed and has helped him really thrive, and to be able to get the cheapest electricity rates that families of kids with disabilities are able to get, plus some more monetary benefits, meant to assist parents of disabled kids to give them as much help as they can get.
So I thought it would be simple for Rose. Once she had the first diagnosis, and by an expert in the field, I thought it would be a cinch to get the child development clinic's doctors to confirm the diagnosis and then move on to the next step.
Only it wasn't nearly so simple. To say the least.



I went to the clinic with Rose, but it was the morning after something significant happened in our divorce process, and I stupidly mentioned it to the evaluating doctor, who then automatically decided that Rose couldn't possibly have autism, it must all just be from her trauma seeing her parents bad marriage, and they said they refused to help us, we needed help from child services or some other organization that dealt with children of divorce. They refused to acknowledge her autism, and the doctor B who I went to said that the original doctor, Dr A, who diagnosed Rose was the one who taught Dr B about autism, but Doctor B doesn't agree with her assessment. She kept saying things like "theory of mind", repeating that because Rose displays theory of mind, she can't possibly have autism, but that's one of the bigger differences between boys and girls with autism, girls generally don't have a problem with that, and it is not one of the diagnostic criteria for autism at all.

At this point I didn't know what to do. I called Doctor A, and she gave me numbers of private doctors who'd be able to confirm her diagnosis, that she said were sufficiently knowledgeable on the topic, but the two doctors weren't available, one on a sabbatical, and the other I don't remember what. So then Doctor A made many phone calls to the health clinic to try to convince them to say that Rose had autism, so that I can get her services, and the closest she got was convincing the head doctor at the clinic, Doctor C, that Rose would do best in a class for kids on the spectrum, but Doctor C wouldn't sign off saying Rose had autism even if its the only way to get her into the class.

So I was at an impasse. A few months passed. A few months in which I had no idea what to do, when Rose was still in a regular class because I couldn't get her into special ed without the diagnosis, and without two autism diagnoses, I couldn't proceed at all.

Finally, something happened which made me realize how much the rest of my family was affected by the fact that Rose wasn't getting any help, and I was so upset and I tried to see if the waterworks would help. I went to the office of the child development clinic and cried out my eyes to them, begging them to help me, to please get Rose the help she needs, and they said that they'll do another ADOS (autism diagnosing test) but because Rose had done it in the past few months, they had to wait more months, because you aren't allowed to do them within 6 months of each other because it affects whether or not the diagnosis would be accurate. (Oh, and by the way, there never is a reason to do another ADOS! One is enough!!!)

The day of the ADOS test came, I arrived at the clinic, and I saw that it was doctors B and C who were giving it, and I was so upset and pretty much stormed off crying. Because any autism test, even the ADOS test is subjective, and doctors B and C had already decided that Rose didn't have autism, and they were doing this test just to shut me up and cover their bases. But I knew before they even started it that they'd say after the test that she doesn't have autism, but some lady at the clinic convinced me to let them do it again, and of course I was right. The results of the test, according to them, is that she has sensory issues, behavioral issues, emotional issues, adhd, etc... but all she needs is emotional therapy, "because by a certain age emotional therapy deals with sensory issues" (I'm sorry, but what???). I was sitting there begging them, saying that this kid needs occupational therapy at the very least, telling them that there isn't a kid in the world who is more an example of the need for OT than she is, and finally they acquiesced and said that they'll give her coverage for OT. And recommended that I put her in a special ed class for kids with emotional issues.

With this, I finally was able to contact the local school board about getting her into special ed. Without two autism diagnoses they wouldn't be able to put her in a class for kids with autism, but any special ed is better than nothing, and she'd be getting services in the school day. So I started the process and she got approved for special ed and they said they'd contact me about placement.

Meanwhile, I was at my son Ike's end of the year parent teachers' meeting and ended up speaking with the principal of the school about my issues with getting Rose's autism diagnosis confirmed, and she told me of a psychiatrist she knew who probably would be a good fit, and would be open minded enough to see my daughter's situation as autism, even if she was less stereotypical. So I made an appointment to see him.

Then I got contacted about placement for Rose. It was in the local class for kids with speech delays. I really was annoyed. Specifically was told she'd be put in a class for kids with emotional issues, speech delay is not her issue at all (she's quite verbal, another reason why the doctors were not noticing the autism), but decided to try to make the best of it.

That afternoon I saw the psychiatrist who fortunately saw sense and gave me the second autism diagnosis for Rose, and with that, I turned back to the school board, and they approved her for a special school for kids with autism, exactly what I wanted.

I applied and Rose got accepted to the school with the best autism program in my country. Literally. People move from around my country to be local enough to send to this school. It has so many services and an amazing reputation and I am so excited she's there. Though the kids in the autism program are mostly boys, this year they have enough girls in the program to have their first class of just girls, which is amazing, especially because of how boys and girls present differently with autism. Rose loves her school. I love it. The teachers and staff are amazing, and the amount of services she gets are wonderful. For the first time, she actually has friends in school, because there actually are kids like her!

One thing though.

Disability. I applied for disability for my daughter. This school requires the kids in it to get disability, because then the school gets money from the government. They know that Rose is currently in the process of applying for disability. But that's not going easily.

First, I sent in the paperwork for Rose's autism diagnoses to the government body that deals with disability, and I got a letter back asking me to send in the paperwork from the child development clinic. This didn't make any sense to me, because the legal requirement for disability here is two different autism diagnoses, one from a psychologist or similar (Doctor A) and one from a psychiatrist or neurologist, and I had that. So I went in to their offices to ask them about it and they said that too many people are falsifying documents so they don't believe its really autism unless the child development clinic says that.

At this point I was totally flabbergasted. That isn't the rules or the law. I called up an organization that deals with autism rights and they told me that what the disability offices are telling me they're requiring is actually against the law, and if they insist on it, they'll give me a free lawyer to fight them in court. That two diagnoses like I had was enough.

I was invited to bring my daughter to a committee meeting (maybe its what you call a hearing in the US?) at the government body that deals with disability, and I went to another government office whose job is to prepare your paperwork for the disability committee meeting, and they said my paperwork was perfect, and there's no reason whatsoever for them deny giving my daughter disability...

Rose, having fun, right after the disability committee meeting.
So then we had the committee meeting, was told that we'd be contacted within a month with the results... and the results are:

They're inviting my daughter for an evaluation with their own doctors.

I literally was crestfallen when I heard this. It actually happened on my last day in England and it upset me so much that I didn't want to get out of bed, to face the world, I was so broken. But my friend convinced me to get out of bed and at least enjoy my last day in England.

Now that I'm back home, I contacted the organization for autism rights, and they told me that they have every right to demand their own in house evaluation, and hopefully it won't go so badly, especially since her first diagnosis was from the renowned expert in the field... And that worst comes to worst, if they deny her autism diagnosis, this organization will help me fight in court to get recognition of her autism. So at least that.

But why am I so worried about the disability? Well, I mean there's the fact that disability would mean getting disability payments is one thing, something that would really help me give my daughter the help and tools to help her thrive. But that's really not even my priority. At this point, the thing that worries me the most is that if they deny her disability, that Rose's school would kick her out. It's such a wonderful school and she's getting so many services and I'm so happy with it that the thought of having to move her to another school, the class for kids with speech delays, just breaks my heart.

So if you're the praying type, if you want to pray for us and our family, in two weeks is Rose's next evaluation. Please pray that this organization's evaluator sees the struggles Rose has, and sees how much she needs to be getting the autism help she's getting, and will confirm her autism diagnosis.

Lastly, this is why I'm so glad that Rose is being part of the study on girls with autism. There's such little awareness of what girls with autism looks like and that's what's causing all our problems here. Hopefully, in not too long, with the results of this study on girls with autism, and how it differs from boys, the knowledge of how autism can look will spread, and girls like Rose will be able to get diagnosed more easily, and not need to go through this headache we're going through now.

4 comments:

  1. Hope you get a resolution with this problem soon. It takes so much energy.

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  2. What a frustrating journey! It's just maddening when you can't get the bureaucracy to move on something that you can see so clearly. I hope you get the results you need at the next evaluation.

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  3. Will certainly pray for you and Rose. My daughter didn't have her autism diagnosed until she was 12, and then there was no help for it at all. She is now 22 and suffering with horrible MH problems because of this. It sucks, and it's really not on that little AS girls are still being denied a decent start in life because of so called experts ignorance and prejudices.

    BTW my daughter's issues were also blamed on her parents' divorce, and she still meets psychiatrists and psychologists every so often who tried to convince her that she has neither ASD nor ADHD (which she didn't have diagnosed until two years ago, again because girls, especially those with autism, present differently) but is suffering from "emotionally unstable personality disorder" due to childhood trauma.

    And I hate it when people she depends on for help are refusing to see HER, but are instead seeing some phantom that their own lack of knowledge has conjured up. Not least because it often results in prescriptions for completely unsuitable medication, which just makes her struggle even worse.

    Sorry for venting :-) Just wanted to say that you are doing the right thing to prevent the same happening to your daughter.

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